2001
April 1, 2001
Subject: Grant Munsey is really sick!
Hi, Marianne! Grant asked me to let you know that he'll be
out of the office for at least a few more days. It turns out he's really sick.
Best diagnosis so far is brain stem encephalitis, and he's in the ICU at
We have had an unforgettable terrifying weekend, beginning with Grant not being able to walk and actually falling several times on Saturday morning. His legs were also getting numb and shaking uncontrollably. We called the paramedics, since I couldn't lift him. They came with a big fire truck and an ambulance. The hospital folks analyzed about twenty vials of blood and still didn't know what the problem was. Most of Saturday night they were talking brain or spinal absess requiring emergency neurosurgery! Poor Grant had a spinal tap, two CAT scans, and an MRI. Meanwhile he wasn't getting any better. Today his speech began to be very slurred. The frightening thing was that he wasn't aware of it.
He's been incoherent and semi-conscious most of today. Tonight they are starting bigtime steroids, because what he has, according to the doctors' latest theory, is an autoimmune problem. He DID have the flu starting about 2 weeks ago, and mostly got over it, but his body never got the message to stop making the flu-attacking antibodies, so it kept making them and then started aiming them at his own brain cells.
The nurses are very reassuring about the prognosis -- full recovery -- though the doctors talk about “a serious condition that requires management.” Everybody is pretty vague about exactly how long it's going to take him to get back to normal. You'll know Grant's feeling better when he asks for his computer and starts emailing people again. He'll be able to have visitors also once he's out of the ICU, but everybody is maddeningly vague about when that will be. We'll know a lot more in a few days.
Thank goodness for Adobe health insurance!
Regards, Sandy (wife of Grant)
April 3 Update, no news??
Hi Marianne
I was kind of scared yesterday because Grant had a high temp (103), but I talked to the nurse this morning and that seems to be going down now. He is still “locked in” -- the doctors say he can probably hear and understand everything going on around him when he's awake, but he can't respond because he's completely paralyzed.
The official name for what he has is acute disseminating encephalomyelitis of the brain stem. There's not much known about it because it's so rare.
I am concerned about the outside plants at the Aptos
house... if anyone lives over there, it would be nice if they could go over and
water the plants around the house on the outside. The hose is already all hooked up -- it's
pretty obvious what to do. The address is
Thanks for everything. I can't tell you how comforting it is to me to know so many people are thinking of Grant and having good thoughts for him. I remain terrified, and have a major crying meltdown several times a day, but okay otherwise.
April 4, 2001
Thanks so much for the fruit basket. I received it on Monday but only after I spoke with you on the phone.
Today (Wednesday) he's still in the coma. Things seem stable. The doctors are trying a new medication because the steroids don't seem to be working. They said there's about a 50-50 chance this new medicine will reduce the inflammation. They also said some people just spontaneously come out of this sort of thing, medicine or no medicine.
Thanks for the good thoughts and prayers. It means a lot to me to know that so many people are concerned.
From: JCDave@aol.com [mailto:JCDave@aol.com]
Sent: Thursday, April 05, 2001 7:13 AM
To: sandy_lafave@wvmccd.cc.ca.us
My thoughts, and deep hopes are with both of you. You were with me in meditation this morning, and will continue to be.
love,
Dave
From: Marianne
Sent: Wednesday, April 04, 2001 1:32 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Update on Grant -- no news
Thank you so much for the update
If prayers and wishes and thoughts are enough to pull him through, believe me, there sure is a lion's share coming from these two buildings. Everyone has asked about how you're doing too so please let us know if there's anything at all we can do. Is everything okay with the Aptos house? If you need plants watered or mail or papers picked up, we're available... anything else too. All you need to do is let us know.
Just in case you can't find it, here's my home number again. Jack and I will be around all weekend and are happy to be available to do errands or give rides or anything at all, okay?
Hang in there. We're all thinking about you. As we said in the note, don't forget to take good care of yourself too.
Thanks again for the update,
Marianne
April 6, 2001
To: (not sure)
Today (Friday) no news. He is still in the coma. He had a trach tube put in this morning so he wouldn't get any damage from the ventilator. Apparently they are setting up for a long-term thing (you can use a ventilator up to 10 days without damage -- the fact that they're inserting the the trach after only 5 days says to me that they don't expect this to end soon).
I am up and down. I'm trying to stay positive for him but having major crying meltdowns several times a day, feel like I can't breathe right, having shaking spells, etc. His prognosis is unknown.
Lots of people are being very supportive. Grant's parents are here, but they are leaving tomorrow. One of his sisters will come later. My brother Danny comes by every day. We talk to him and read to him, etc. when we're at the hospital -- that's supposed to be good. I want someone by my side all the time but the person I really want is Grant of course.
I tried to get your phone number from 613 information but it was busy -- maybe I'm doing something wrong. Could you send it to me via email so we can talk? I'd really like to talk to you; I need support and encouragement so I can be strong for him.
Well, I've got to get ready to go over to the hospital now, to see what fresh horror awaits ...
From: Marianne Deaton [mailto:mdeaton@Adobe.COM]
Sent: Friday, April 06, 2001 9:11 AM
To: sandy_lafave@westvalley.edu
Subject: Aptos is just fine
Jim King and his wife stopped by your Aptos house last night and watered the plants (of course, with all this rain, I don't think it'll be a problem for the rest of the weekend). He said you were right, the view is magnificent.
We'll make sure it's taken care of as long as you need it.
Some of Grant's friends here want to send some messages for him - updates on office life and funny stuff we know he'd appreciate. Could I collect them and send them to you? We were thinking if he can hear you, perhaps you could read them to him. Let me know if this is a bad idea though and I'll discourage it.
Hoping all's stable,
Marianne
Grant -- Monday April 9 (2 messages)
Dear Friends
Grant has been receiving immuno-gammaglobulin treatments since Wednesday, since the original meds didn't seem to have any effect. It's not clear yet if they're working, but it may take some time.
For the last couple of days, he has been spiking a temp (104 degrees) in the afternoons. This has been a cause of some concern but, maddeningly, no one knows what it means. The interpretations range from benign to disastrous. It could be a reaction to the medications, or it could mean a "neurological event". One of the doctors told me it would be a very ominous sign only if his temp couldn't be controlled. Thankfully, they have been able to get the temp down relatively quickly every time so far. Yesterday they used a cooling blanket, and that worked very well. The report this morning is that he "had a good night" last night, and his temp is now below 100, and that's the lowest it's been for days.
His spontaneous movements are less frequent and less spastic. Again, no one knows what this means. It might mean the brain swelling is going down, the encephalitis is running its course, and he's on the way to regaining voluntary control -- or it might mean ... well, you can imagine.
They are planning to do another MRI Tuesday or Wednesday if he doesn't wake up. The MRI should show how things are progressing -- whether the swelling is more or less, and whether it's spread beyond the brain stem.
He's been having some trouble with his blood sugar levels, so they have him on IV insulin. On the positive side, his heart rate, respiration (assisted by the ventilator), oxygenation, and blood pressure all remain steady and strong.
We've been talking to him, reading to him, playing music,
etc. in the hope that he can hear when he's awake. On the advice of his uncle
I am so grateful for all the support you've been giving me during this very stressful time. It is wonderful to hear from you all, and it really helps. I would never have guessed how much it helps.
Our neighbors' children wrote him letters this weekend. One child wrote: "I hope you can wake up. I wish you'd never gotten sick at all. You must be scared. I'm scared myself." I think that just about sums it up, don't you?
If you want to send emails for me to read to him, please do!
Love,
April 9 Message 2
They did the MRI -- better news
Hi Marianne!
It was kind of a surprise to me (and to the primary care MD), but they did the MRI today. Good results! No spreading of the swelling, no infection -- so his cerebral cortex is intact -- in fact, no significant change at all from a week ago. "No change" was about the best possible outcome, because they were worried the fevers might indicate a spreading of the swelling beyond the brain stem. The fevers are better today also. They had him on a cooling blanket all night, and his temp was actually normal once today -- it went up again but only to 101.
The MDs are thinking of taking him off the steroids altogether, since they seem not to help and to mess up his sugar levels.
He has a slight staph infection (picked up at the hospital, which I gather is not unusual), but they're not worried about it.
The big honcho infectious disease doctor has been talking to other doctors all over the world about Grant's case, and he's "guardedly hopeful" that the disease will pass by itself. It's just a matter of keeping Grant healthy (as healthy as it's possible for a comatose person to be) and waiting. The consensus among the experts is that it may be another 3-5 WEEKS in intensive care before he wakes up. Then a long recuperation period -- 3 days recuperation time for every day in the hospital. All kinds of nasty things could happen in the meantime. Still, combined with the negative MRI, it's the first hope I've had in ten days.
Since it's likely he can hear and understand at least some of the time, please continue to send him your wonderful updates and messages!
I will sleep better tonight, I think. Keep having good thoughts for him!
April 10
Spinal tap good, staph infection bad
Today (Tuesday) they've discovered that Grant has a resistant strain of staph. The infection is called MRSA, and from what I've been reading on the net, it's potentially very dangerous. Now when we visit we have to wear gowns and gloves. This sounds like exactly what the doctors said we wanted NOT to happen.
From: Susan Doering [mailto:sdoering@Adobe.COM]
Sent: Tuesday, April 10, 2001 10:54 PM
To: sandy_lafave@punkalunka.org
Subject: Hello...
Hello
We met a couple of times at the Adobe office; I used to sit in the office next to Grant. Grant and I started work together on the same day almost four years ago (and we still mark that day with a group lunch) and we're both Teletubby fans... I've been meaning to write and meaning to write and I keep putting it off until I have more time and have something clever to say. The time and cleverness don't appear to be showing up anytime soon so here is a wee email to say that I am thinking of you both many, many times a day. I can only begin to imagine what you are going through and it's absolutely horrific. How are you holding out? You're such a trooper. I read your hopeful and informative emails that Marianne distributes and my hope that Grant gets better soon stays very much alive. The thought that someone as robust and hearty and healthy and full-of-vim-and-vigor like Grant is lying comatose is so absurd. It just can't be true...
Grant would be so very touched to know how concerned all his fans at the office are, how unbelieving they are when they hear he is so ill. There are few people at the office who spread as much good cheer wherever they go as Grant does. Just a couple of weeks ago Grant stopped by my office to tell me he's back on the 10th floor. What a treat it was a) to see him spontaneously and b) to know that I'd be running into him again on a regular basis. Please tell him that enough is enough and we want him back in all his healthy glory. This is a far, far too serious way for him to take time off!
I am thinking of you,
Yours, Susan
RE: Hello...
Hi Susan,
Thanks so much for your kind letter. I wish there were something anybody could do. It helps to know other people love Grant too.
From: MeMe Rasmussen [mailto:meme@Adobe.COM]
Sent: Tuesday, April 10, 2001 5:35 PM
To: sandy_lafave@punkalunka.org; sandy_lafave@westvalley.edu
Subject: Hello from a friend of Grant's
I'm a friend and colleague of Grant's here at Adobe. In fact, Grant and I, along with Susan Doering (who is still here at Adobe), all started at Adobe on the same day and went through orientation together. We have been friends ever since. I'm the senior attorney supporting Greg's group and hence have also supported Grant with any legal issues he has (e.g. getting his open source site up).
I just wanted to drop you a note to let you know how much I've been thinking of you and Grant. It seems every moment my brain isn't focusing on something specific, it drifts off to Grant. I cannot fathom what you must be going through! I have spent a lot of time in hospitals supporting both my parents through various things, but never for my husband (thankfully). However, I have also been a patient many times, once with a chronic illness that seemed to take forever for the doctors to diagnose. I know how painful all that was for me, but what you've had to face seems much harder.
I understand that you are spending a lot of time in the hospital alone, especially now that Grant's parents have left. Hospitals are a difficult place to be when you have someone with you. Doing it alone a lot of the time must be very difficult. I'm sure it is also awfully hard not to have Grant to fall back on for support in all this. When something happens to a spouse it makes you realize how much you rely on them for support.
Even though we haven't met, if it would help to meet someone new and just chat for awhile, let me know and I will drive over to the hospital to chat during lunch, after work, for breakfast, whatever. I always have found talking to people helps. If this sounds appealing (and not stressful) for you just let me know and we can arrange it.
I have also been trying to figure out what I can do to help,
as has everyone else here who knows
Grant. Unfortunately, we all feel
completely helpless and know that we
can't do much more than pray for him, send good vibes his way, and send emails to you and
him. However, in the last email Marianne forwarded to a group of us from you,
I picked up on something that I may be
able to help you with. Hopefully, you
won't need it, but if
I'm sure you realize this by now, everyone here at Adobe who knows Grant is thinking about and praying for him and for you. As I'm sure you know better than anyone, he is just a wonderful person; I don't now a single person who thinks ill of him. His humor and his laugh make many a dry meeting enjoyable. He is always willing to help out with any issue. He appeared at my office door one afternoon saying that he decided it was time I got wireless. He spent the next hour trying to get my laptop wireless. Because I was on an old OS, it never quite worked, but he said he'd come back as soon as I upgraded. I have since upgraded to Win2K and fully expect him to be back in my office helping me out soon! He is one of the few folks who has offered to help me with something without me ever asking for help.
My thoughts are with both of you. If you'd like to chat or need help with something, please feel free to give me a call.
MeMe
RE: Hello from a friend of Grant's
Hi MeMe,
Thanks for your kind letter.
I really appreciate your offer to help deal with
It would help, I think, to talk to people from Adobe, if you don't mind if I blubber and bawl occasionally.
From: Marianne Deaton [mailto:mdeaton@Adobe.COM]
Sent: Tuesday, April 10, 2001 4:46 PM
To: sandy_lafave@westvalley.edu Subject:
Re: Spinal tap good, staph infection bad
Oh
Arrrggghhh! You must just be nuts by now. It seems like every time you get a bit of good news, there's something that knocking the wind out again. I'm so sorry. So, the spinal tap was good news even if the staph wasn't? What were they looking for in the spinal tap?
If they're still planning on stopping the steriods, wouldn't that help boost him immune system to help stop the staph infection? Do you have any idea how they're going to treat the infection? Geez, maybe the staph thing is the reason for the fevers?
I know... probably too many darned questions that you don't have answers to!
I'm not expecting you to answer all these silly questions, I just wanted to get back to you to tell you I'm sorry and I'm thinking about you. It's still a fairly good day all in all, right?
How are you holding up? Is someone making sure you've got food around the house and stuff like that (and that you're eating)? ;-)
Please tell me if there's anything at all we can do. Like laundry or grocery shopping or any other mundane stuff you need (or big stuff).
You and Grant are never far from our thoughts all the time. Grant's sister is there now, right?
Take care and try to get some rest...
Marianne
RE: Spinal tap good, staph infection bad
(Reply to Marianne)
You're right, I am going nuts.
Apparently they did the spinal tap yesterday to look for any change in the spinal fluid from March 31, when he first went in. There was no change this time, and that means nothing is worse brain-wise. So that's good.
The staph infection terrifies me. The doctors kept saying there was hope IF we would prevent this kind of thing. They said that people don't usually die of the ADEM but rather from complications, such as “opportunistic infections” -- such as this MRSA. I am told they cultured his staph in the lab, and that they found Vancomycin zapped it in the lab, so they started him on that. The doctors are referring to this as a "
"treatable infection", which I suppose is better than the alternative. They say he's still pretty strong -- though it's hard to tell from looking at him.
The really creepy part is that everyone has to wear a gown and rubber gloves to see him now -- Martin experienced this yesterday. And I can't touch him without the gloves! This breaks my heart. I am concerned about all sorts of things that may or may not matter -- e.g., his blood pressure has steadily gone lower and lower. The nurses say this is nothing to worry about as long as all the other vital signs are good (which they are); still, it concerns me. I am not very good at focussing on the positive. I could use some help with that!
He spiked a fever again yesterday, and yes, the fevers might be the staph, so we might see some reduction in them with the Vancomycin. On the other hand, they might be the encephalitis. He's been under a cooling blanket which does not seem to work very well, mechanically, I mean. It works by pushing cold water throughout, but it gets kinked sometimes, like a garden hose, and then it's not cool at all, but warm! And the alarm doesn't sound when this happens.
I need courage, so anything anybody can think of to say that's positive, I'd really appreciate hearing! I am so scared. If people would just like to come by with hugs and shoulders to cry on, that would help me.
Home phone is 408/252-1135. Be prepared to hear Grant's voice in the greeting.
Thursday April 12 morning
Grant starts a new treatment today
Dear Friends,
Well, the staph infection sounded really bad to me, and the nurses seemed extremely concerned, but the doctors seem pretty nonchalant about it. His pulmonary doctor said he "just has a few bugs". MeMe said it's just a matter of debugging, then, and I hope Grant sees it that way. If it's anything produced by Grant, it probably doesn't have that many bugs anyway. I gather he didn't have a spiking fever yesterday -- his temp stays around 101 -- so maybe the Vancomycin is having some effect.
I heard last night that the doctors will start plasmaphoresis (also called "plasma exchange") starting today. As I understand it, it's procedure for cleaning bad stuff out of the blood. They take out all the blood and treat it and then put it back. It's funny, my brother Dan mentioned that as a possible therapy a week ago. (Is it commonplace for ordinary people to have these bits of obscure medical knowledge? I am astonished at how much people know. Am I not watching enough soap operas?) Then yesterday MeMe, who's found a lot of info on the net, also asked about it.
I gather it sometimes works wonders for similar-but-not-identical conditions like Guillain-Barre syndrome. It sounds pretty drastic, but I gather it's not any more dangerous than anything else they've been doing to him.
Keep your fingers crossed!
From: Norman Boccone [mailto:norm@sjrugby.org]
Sent: Thursday, April 12, 2001 9:41 AM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant starts a new treatment today
From: Eric Mueller [mailto:eric@muellerzone.com]
Sent: Thursday, April 12, 2001 10:13 AM
To: sandy_lafave@punkalunka.org
Cc: sandy_lafave@westvalley.edu
Subject: Grant
Dear Sandy,
I am very sorry to learn of Grant's condition. I am saddened beyond words.
Please tell Grant that our thoughts and prayers for a speedy recovery will be with him. I have been in contact with some of the old Cimlinc gang, and be assured they all have similar sentiments.
Sandy, if there is anything we could do to help you through this very difficult period please do not hesitate to let us know.
Sincerely,
Eric and Melody Mueller
-----Original Message-----
From: Valerie Dua [mailto:vdua@Adobe.COM]
Sent: Thursday, April 12, 2001 9:12 AM
To: sandy_lafave@westvalley.edu
Subject: Benefits
Dear
I believe Marianne mentioned I would be contacting you regarding Short Term Disability. I wanted to let you know that Adobe is going to go ahead and continue Grant's regular pay without you having to complete the Short Term Disability paperwork at this time. Please do not concern yourself about it!
Additionally, let me know if I can help you with any issues
with
Valerie Dua
Sr. Benefits Specialist
ext. 66205
Grant April 12 evening
Today Grant started the plasmaphoresis. They wheel in a big machine that has a centrifuge about the size of a clothes dryer. It separates the red blood from the plasma. They collect all the plasma and replace it with fresh stuff. The theory is that the bad antibodies he's making will get flushed (I think).
He also started receiving blood transfusions. Apparently they are drawing so much of his blood -- and some red cells get damaged also in the plasmaphoresis -- that he's getting anemic. I don't like to see yet another bag and another line, but I guess it's good that they're monitoring him so closely.
On the plus side, the Vancomycin seems to be working on the MRSA infection, especially around his trach -- there's lots less oozing and bleeding.
Last night I read him the latest pile of your email messages and I had the feeling I was getting through, though I can't say why. It's wonderful of you to make him feel he's still part of this world, to call him back as much as possible. So if you think of anything you want to say to him, please don't hesitate to send it on! FARAWAY FAMILY AND NON-ADOBE PEOPLE: This goes for you, too! We'll have quite a scrapbook for him to look at when he gets well.
Keep him in your thoughts. We're not out of the woods yet by any means.
Grant Friday April 13
Things seem pretty stable today. Grant's still comatose, and the trach is still oozing a lot, but the pulmonary doc was not concerned. Guess why? Because the ooze didn't SMELL BAD! Grant's blood sugars are getting quickly back to normal. He's off the steroids. His platelets are holding, so no transfusions today. The best news is that his temperature seems to be normalizing. He got below 100 all by himself today -- without the cooling blanket or any medicine. He gets another plasmaphoresis tomorrow.
Things are still serious. The most important issue now is just the damned coma, and infection risk. They took more blood cultures today, so we'll know if he has any new bugs in a couple of days.
No change is not bad, for a change!
From: Martin Newell [mailto:mnewell@mindspring.com]
Sent: Friday, April 13, 2001 9:15 PM
To: sandy_lafave@westvalley.edu; sandy_lafave@punkalunka.org
Subject: Info on Plasma Exchange study
http://www.ninds.nih.gov/health_and_medical/disorders/acute_encephalomyelitis.htm
On the left there is a link called "Studies with patients", which takes you to ClinicalTrials.com at:
http://clinicaltrials.gov/ct/gui/c/a2b/action/SearchAction/screen/OpeningScreen?Term=Acute+Disseminated+Encephalomyelitis
On that page is a link called Phase III Randomized, Double-Blind, Sham-Controlled Study of Plasma Exchange for Acute Severe Attacks of Inflammatory Demyelinating Disease Refractory to Intravenous Methylprednisolone which takes you to:
http://clinicaltrials.gov/ct/gui/c/w2r/screen/ResultScreen/action/GetStudy?order=1&xml_file_id=xmlfiles%2FORD__NCT00004645.xml%40csdb&JServSessionIdzone_ct=exlk6js301
which has some information. At the bottom of this page is a link called "More information is available for this study", which takes you to Rare Diseases Clinical Trial Abstract at: http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro11693.html
I hope this works for you, and gives you some information.
It was good to see you this evening. I really thought Grant was looking better, without that cooling blanket on. The pulmonary lady explained a bit of the breathing machine. I had wondered why there were two quite different patterns on the display and she said the machine handles two different types of breaths, and it's all quite normal. It was good to meet the doctor - she seemed like a very nice person.
I'll contact you either Sunday evening or Monday morning to see how things are. Hang in there, we're about half way to the early target now.
Best, --Martin
From: Marianne Deaton [mailto:mdeaton@Adobe.COM]
Sent: Friday, April 13, 2001 5:51 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant April 12 evening
Hi again
It occured to me reading your last email -- we're all learning a lot about this stuff and ways to treat it. No doubt more that you ever wanted to know but nonetheless, we'll sure have an idea of what anyone is talking about in the future. Even though I would trade the knowledge for having no reason to know this, it's pretty interesting.
I talked with Martin this morning. I know the updates are a pain. People here really look for them but just the same, if it's between you getting some rest or doing something you need to do or writing an update, choose the former! We talked about next week and we'll all be around to spend some time at the hospital so hopefully that's one less thing for you to worry about.
Hang in there
Please give me a call if you want to talk or if we can do anything for you over the weekend.
This is for Grant:
So, you missed a really wacky staff meeting this week. You would have loved it though. It was actually
You would have been proud of MeMe. She quite irreverently drew a comparison between this new organization (with business units) to the way the org looked when "the three musketeers" were here. It took us a few minutes but the veterens quickly figured out she was referring to Ross Bott, Jack Bell and Bob Roblin (remember the dead guy under the tree ads?). You've been in those staff meetings where one thing happens and the whole meeting goes out of control like a runaway stage coach. This was a classic. Everyone drew lines to the "new org's" three musketeers but it didn't stop there. Of course Hopwood had to mention D'Artanon, the fourth musketeer. Everyone was in tears by the end. Good thing Bryan Lamkin wasn't there. I don't think it would have been nearly as much fun.
So, don't worry by the way, about the reorg. It's all stuff you already know about. Just the same old business unit model Greg's
been talking about for months now. There
are more adjustments coming. Laura,
So, I notice that when I'm writing now, every paragraph starts with "so". I wonder where that comes from?
We all miss you terribly. I can't wait to hear you coming around the corner with your coffee beaker again. Also, there are some freshmen on the floor who haven't learned the art of getting a cup of coffee while the pot is still brewing and every time I walk in there I have to mop up a lake of coffee. We needed to do a tutorial or something. I can't figure out the balancing act you do.
I hope I'll be able to see you next week.
Take care -- I'll talk to you soon.
Marianne
Grant Saturday April 14
He's much the same as Friday -- many things stable and some even improving, though he is still in the coma. His blood sugar is back to normal levels, so they've taken him off the insulin. His platelets are okay now, so no transfusions.
He got his second plasmaphoresis Saturday, so he may need some blood Sunday.
As of Saturday night we hadn't got any cultures back from the blood they took Friday -- checking for infections -- but the doc said that may mean things are just not growing, and that would, of course, be good.
He had a fever Friday night and Saturday in the 101 range, but it was down to 99 by the time I left the hospital Saturday night.
The docs say "things seem to be moving in the right direction" -- though there is still the small matter of the COMA...
Thank you all so much for your wonderful emails. I think his eyes get kind of softer when I read them to him. Sometimes I think he smiles a little. I hope I am not dreaming. It is always a shock when they lift his eyelids and there's no focus at all.
I am deeply touched by the depth of feeling being shown for him. I don't think he realizes how much he means to you all. For me his light is just obvious, and I have always suspected that everyone else MUST see it too. It is wonderful to have that so warmly confirmed.
Love,
From: Betty Bates [mailto:bettybates@hotmail.com]
Sent: Monday, April 16, 2001 9:29 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant MONDAY, April16
Hope you had a good day at school Love, Betty
RE: Grant MONDAY, April16
Gee, sorry about the machine! I never know when they're going to show up. One day it was finished by 10 AM; the other time they didn't start until about 5 PM.
I think Martin is going to call you about the schedule.
Thanks so much!
Grant Monday April 16
Much the same today -- this is good. The blood cultures came back negative, so no new bugs! And the staph is under control. His temp is consistently around 100 -101, so the docs aren't worried; they say that's just "the syndrome" (the ADEM, I guess). [ADEM = acute disseminating encephalomyelitis of the brain stem, which is what they think he has]
He's still comatose, but both Leslie and I thought he looked better somehow today. Less labored breathing, more relaxed.
All the other vital signs are also good and strong, so all in all, a good day.
Grant Tuesday April 17 Day 17 of coma -- easy to remember because he fell asleep on April 1. He's pretty stable. Slightly elevated white blood count, temp above 102 this evening. He seems to run a higher temp in the late afternoon every day. Trach oozing seems under control -- finally! And no transfusions today. He gets the fourth plasmaphoresis tomorrow.
Today when I raised his arm in my lame attempt to imitate the physical therapist, he went into a really long (30 sec at least) spell of what seemed to me to be pain, rolling his shoulders, grimacing -- Leslie said she thought he was coughing. Anyway, whole lotta sustained movement, even if it was just reflex.
Love,
From: Valerie Dua [mailto:vdua@Adobe.COM]
Sent: Wednesday, April 18, 2001 1:32 PM
To:
Subject: RE: Benefits
Hello
I will get back to you by tomorrow with answers to the
below. I am going to contact
I will let you know as soon as I hear back from them. Thanks, Valerie
At 01:08 PM 4/18/2001 -0700, you wrote:
Dear Valerie,
Thanks so much for writing to me. I'm Grant Munsey's wife. He's been in
intensive care for 18 days, and the doctors are talking in terms of
additional WEEKS in intensive care.
I am beginning to receive bills and even got a check from
the ambulance, but I am not sure what to do next. The bill from the
ambulance service was about $825 but the
“negotiated charge” was only around $625.
$500 or so, because some of the items weren't covered, and they said
they pay 90%. So do I now owe the difference between the check
amount and the original charge ($825), or between the check amount and
the negotiated charge? Is there always going to be this difference
between the charge on the statement and the “negotiated charge”? In
general, should I ignore the charge on the statement and pay attention
only to the negotiated charge?
Does
the hospital? I'd much rather
What percentage of charges does
different things? Is there a limit? The
doctors are now talking about “thinking in terms of weeks” rather than
days of hospitalization. I am worried that the total charges may exceed
the limit.
Grant is also covered by my insurance at
Shield PPO. I gather this means Blue Shield will pick up the
charges
doesn't cover; e.g., if
10%? Who coordinates the billing, then? Will the hospital
bill
collect from
I have never had to deal with big medical bills before, so this is all
new to me. Thanks for any help you can provide!
RE: Benefits
Hello Valerie,
I talked to the billing people at the hospital, and they
gave me some answers about how they will bill for the hospital, anyway. (I don't think their bill includes the
doctors, or the ambulance service.) The hospital will bill
Does this sound right to you? Thanks for any other info you can glean!
Grant Wednesday April 18
"Stable" is still the word. No changes today. Lots of coughing again this afternoon, with lots of movement. Fifth plasmaphoresis tomorrow.
We're hanging in there.
Grant Thursday April 19
Last night (Wednesday) he spiked another fever (103) around midnight, but it was down by morning. His temp was only 100.2 tonight (Thurs) when I left, so I was encouraged by that. After the fever last night they decided to do some more blood cultures this morning -- the debugging never ends. We'll have results in a day or two.
He wasn't moving much on his own today. Leslie (his sister) and I had a session with the physical therapist, accompanied by a student nurse who was in the hospital for the very first time. We are learning how to do range of motion, exercising his joints, without upsetting all his tubes. Grant continues to educate ... I didn't see any doctors today except in the early morning, so I haven't got anything technical to report. To me, things look the same -- excellent vital signs, except for the fever.
Thanks so much for all your wonderful emails and support. Today was especially tough for me -- Grant was moved to a new room with better lighting, and I can see much more clearly how his muscles have shrunk -- although he hasn't lost any weight. It is going to take some time and effort to get his strength back.
Day 19 of coma today -- the docs say we may see results from the plasmaphoresis by May 1. I hope they are right.
Love,
Grant Saturday April 21
Dear Friends,
I am really scared. Grant seems the same today as Thurs and Friday: better in some ways, even. The nurses all say his lungs seem much clearer, and his temp hasn't been doing anything alarming. He got more blood yesterday (Friday), so I guess there was a problem with his platelets; but that's happened before and no one was too upset.
But the infectious disease doctor -- whom everyone seems to respect a lot and is always called "brilliant" -- spoke with us last night very grimly. He said he was "very discouraged": he thought the plasmaphoresis should be showing signs of working by now, but that Grant was still "totally unresponsive", that his recovery "would be a medical miracle". The doc is concerned about the length of time Grant has been sleeping and the effects on the myelin layer of his motor neurons. The myelin is like insulation that makes the motor signals travel quickly from the brain to the muscles. ADEM is a "demyelinating" condition -- though he also said lost myelin can regrow. So far Grant shows no voluntary movement at all, and the doc says he should, but the signals seem completely blocked. This doc was talking about "indefinite coma", requiring long-term maintenance on the respirator in a nursing home or convalescent home.
You can imagine how I slept last night; I was in no shape to mail you all an update, sorry.
BTW, this was the very SAME doctor who has been telling us consistently (in person and via Grant's primary care doc) that Grant needs to get through this four to six-week timeframe without complications and the ADEM can be expected to run its course. Can you say "schizophrenic"??
I thought I was scared before ... Please, anything you can say to HELP ME NOT TO GO CRAZY would be hugely appreciated. The nurse said "Oh, the doctor has to say that, to cover himself; doctors always do that." DO they?? As I said, Grant seems no different: still comatose, but everything else seems to be holding well. God, this is awful.
What kind of physical therapy?
Dear Joe and Diana,
I am confused because the neurologist (another guy altogether) seems to be the one in charge of the treatment now anyway. The neurologist is consulting with supposedly the best ADEM doc in the world, at UCSF. The plasmaphoresis is THEIR plan.
I have a feeling there is some weenie-waving going on between the infectious disease doc and the neurologist; they have consistently had somewhat opposite things to say. The neurologist was Dr. Gloom and Doom in the beginning -- now he's all chipper, while the ID doc was very optimistic at first, and now he's all depressed.
Re the physical therapy: the PT showed us how to do range of motion on his neck, fingers, elbows, shoulders, ankles, hips, knees, etc., and we've been doing that twice a day (sometimes three times). Is that the physical therapy you mean, or should we (or someone) be doing more? It takes about half an hour to do all the stuff they showed us. I'm glad to hear that Diana thinks it's important, because I do too. You never know how the connections are going to get re-ignited. Today we did the exercises in rhythm while playing Sousa marches, and I had the feeling Grant was in on it. ! I have done the exercises so often that one of the nurses thought I WAS the physical therapist. Anyway, my understanding is that the joints are the number one priority. But can we do anything about the muscle tone? The doc said that's controlled by the brain. But I don't see why you couldn't you get the brain working on the muscle tone issue by reminding it via the muscles.
Love,
From: JoeLaFave@aol.com [mailto:JoeLaFave@aol.com]
Sent: Sunday, April 22, 2001 3:00 PM
To: sandy_lafave@westvalley.edu Subject:
Re: Grant Saturday April 21
I'm glad you heard from Meredith and Chris. All three children have expressed concern about Grant's condition.
Here is what Diana and I have to contribute in regard to your doctor's comments. Diana tells me that doctors do sometimes project the worst case scenario to cover their ass. However, this doctor seems to have changed his tune, indicating he doesn't have a clue about what's going to happen next.
Diana has two suggestions: First, get a second opinion from another infectious disease doctor in another hospital, like Stanford. Second, increase Grant's physical therapy from three times a week to twice a day. This will probably mean retaining a full time physical therapist.
Also, don't let them take down the isolation. This is working well for Grant and is a normal precaution given the circumstances. Diana was surprised he was not isolated from day one.
Our thoughts and prayers are with you,
Joe & Diana
Grant Monday April 23
Dear Friends,
Thanks for all your encouraging words.
Last night we got a second-hand report (via a nurse) that one of the docs (the pulmonary guy) said he thought Grant was responding to pain. The nurse said this was a good sign. Today another nurse said Grant's pupils were responding better to light. This morning I was with him during the plasmapheresis and he grimaced when the dialysis nurse stuck him in the thigh. I don't dare be encouraged by all these things -- but maybe these are the "twinkles" that the ID doc was looking for on Friday and couldn't find.
I haven't talked to any docs today yet, but I'd kind of like to hear this sort of thing directly from them, of course. I'd especially like to hear from the neurologist if he's noticed anything.
I don't know what to think of the mouth movements yesterday
(apparently in response to my request). I hardly dare hope. My brother saw it
too. He told his wife Grant was responding because "
I feel pretty unequipped to evaluate any of this. If there are signs of improvement, they are very subtle ones. Because I see him every day, I don't notice many changes from day to day. But the nurses say they think he may be improving neurologically.
The room he's in is very hot and stuffy, so I brought in a fan from home, and the nurses are letting me turn it on illegally. They said the hospital's "engineering" staff is supposed to check out any new electrical equipment and approve it before they can run it, but nobody from engineering was around yesterday -- Sunday -- and I think they've decided not to call it to anyone's attention. Grant REALLY prefers it on the chilly side, and I can't help but think he's more comfortable with this fan on. His temp in the last 24 hours has ranged from normal to only 101.4. All the other vital-sign stuff seems excellent, too, as far as I know. The primary care doc has been off this week-end (for the first time since Grant got sick), so I haven't heard about last weeks' blood cultures -- but there are no new IV bags in sight. He may get another transfusion tomorrow.
We have been playing John Philip Sousa marches (which he likes), LOUD, during our exercise periods, stretching and rotating to the beat. I was afraid we might be disturbing the nurses -- you can hear the music as soon as you come into the unit -- but they said it was fine. These nurses in his unit are really wonderful.
So maybe there will be official confirmation of what has up to now only been hearsay good news??? Could it be?
Love,
Grant Tuesday April 24
I'm getting all kinds of mixed signals from the docs.
Today I had another frustrating encounter with the big cheese infectious disease doc. Kept shaking his head, dropping Grant's arms down. I hopefully said the neurologist had told us not to expect anything until a week after the end of the plasmapheresis (May 2). He replied, still shaking his head, "Yeah .. believe HIM."
The pulmonary doc, meanwhile, continues to be cheerful and is able to elicit what he says is non-reflex pain response ("higher brain function") from Grant. HE says all the physical stuff is now under control and Grant seems to be getting ready to wake up. The neurologist is mum -- "no significant change," according to him.
The primary care doc (an internist) says Grant is “much better”!
My view: Grant seemed okay to me when I saw him in the early morning -- I did the range of motion exercises in my non-professional way and he moved some (maybe that's the pain response).
In the afternoon, when Doctor #1 (the ID specialist) was there, Grant WAS pretty out of it. I tried to tell him Grant is different at different times of day, but he didn't seem to be paying attention. Maybe he was just trying to be perfectly non-committal.
Anyway, as far as I know, Grant is now healthy as a lumberjack, except for not being able to wake up.
Love,
Hi Martin,
I spoke with Dr. Kathy.
She said Armstrong is always like that, and that as far as she knows, he just doesn't want me to feel betrayed if things don't go well. He really IS very disappointed that nothing has worked so far, but that's because he's usually the hero. He is actually more interested in Grant's case than in any other case she has ever seen him involved with.
It's hard to get a doc to say anything bad about another doc, but she went so far as to say he needed to work on his social skills, and that his message was way too skewed to the negative.
She also said Dr. Satia doesn't really know either. The pain response may be reflex, or maybe not. (This sounds a little evasive to me, but I think that's the most we're going to get from her.)
All in all, she reinforced the view that it's too early to say anything, that different personalities put different spin on things, etc., but that in the end, NOBODY KNOWS. This seems to me to be the truth.
Thanks for all your help today. I get into an emotional train wreck every couple of days.
From: Barbie Jackson [mailto:bjackson@greyzone.com]
Sent: Wednesday, April 25, 2001 4:14 PM
To: sandy_lafave@westvalley.edu
Dear Sandy:
I am sorry that I cried when you needed a shoulder this morning. I hope I didn’t make you uncomfortable. I see your grief and pain and I can't help but hurt for you. I hope it is okay, I would much rather end up crying with you than not to be there.
Last night I was thinking so much about you and Grant, praying that you would get some sleep and that Grant would suddenly be unable to sleep. These last few weeks, we have been assuring you that you are both in the forefronts of our minds and also in our prayers; and I don’t know if it is irritating, if you believe in God, or your thoughts on faith and prayer, but that still small voice inside me kept impressing upon me to write you a note today and tell you something that Johnna had said that left me feeling more hopeful for Grant.
I’ll preface it with this; Johnna has a very strong faith in God, unwavering. I don’t know if you have ever known anyone that seemed to have a direct line to God, or at least had a very strong sense on connection with a higher power but that is the case with Johnna and she cultivates it, so that she only seems to get more and more in tuned to that still small voice inside her. She starts every day with prayer, an hour or two, and never misses it. Not the on-your-knees prayer, rather, she writes it all down. She has journal type prayer books, every request, big or small. It could be a bad mood she wants help with, a difficult class, or it might be a huge petition like healing for Grant. Because she has written her prayers for the last two years she has a record of when she asked for something, when God seemed to speak something clearly to her, when He answered her specific requests. She has a history book of big and small miracles. I look up to her, I guess and have come to believe that if God impressed something on her, it would come to be.
On Monday evening I asked Johnna if she had slept all right on Sunday (we had stayed with you that night). She said she was fine, slept well, but that something strange had happened in the night. She had woken abruptly in the middle of the night and had this very strong sense that God wanted her to pray for Grant. She has been praying for him every day, and it wasn’t the kind of waking up where your mind naturally goes to the big issues as you are waking up. She said it was very different, she woke up abruptly from a deep sleep and it was as if someone had turned on the light, shook her and said “wake up, now, and pray, right now for Grant”. And it wasn’t “pray for healing,” like she had been doing, it was “pray that he will not be scared when he wakes up”.
Last night Danny told me that you asked him if he noticed the pictures in Grant’s room and that on Monday the doctor had said, “Grant may wake up and be scared”. My faith is weak; I have to admit I do more “hoping” than believing. But I am convinced in Johnna’s faith and that God would not have awakened her in the night with such a specific request if it were not what He wanted us to hang our hopes on. I hope it will give you hope, especially combined with the positive words from the pulmonary doctor. I mean, if we can choose whether to believe in the "not sure, don't know" or the seemingly miraculous "coincidences", why not the latter?
Love,
Barbie
Dear Barbie,
I was not upset that you cried; I appreciated it very much. I don't understand why everyone isn't crying too.
Thank you so much for your beautiful letter. You are a real "sister" to me.
Love,
Grant Thursday April 26
Dear Friends,
Grant remains wonderfully stable, but I have had a couple of bad days. I keep running into the ID specialist (Armstrong), the brilliant one who is "very discouraged." (Why is HE the only one I run into???) Yesterday he said nothing at all. Today he said more than usual: that he was still very discouraged, that Grant should have shown some response to the treatments by now, that he sees no signs of improvement whatsoever, etc., and that the way Grant's reflexes are today, he is somewhat MORE pessimistic than before, though he grudgingly acknowledged that we are still in waiting mode. He reiterated the worry about the demyelinization: he said perhaps the ADEM swelling HAS already gone down, but it's left too much damage ... And then the clincher: "You can take comfort that he's not suffering. I'm sure he's not suffering." This was today.
DAMN! Last night, I felt pretty good after seeing Dr. Kathy. According to her, Dr. Armstrong simply never says anything positive unless he's really sure. But now Dr. Kathy is gone to a conference until Monday, so I don't have her around to ask about today's conversation with Armstrong. I haven't seen the neurologist in a week or so either.
On the positive side, Dr. Kathy spent a lot of time last night talking with me. She showed me Grant's case log book, and noted how on April 9, he had thirteen problems listed, "all of which could have killed him." Stuff like the anemia, high fevers, high blood sugar, bad electrolytes, MRSA, etc. And as of last night, he had only two: the coma, and a lung infection ("regular" staph) for which he is receiving antibiotics and which doesn't seem to be getting worse. In other words, he's beaten a lot of things already -- not neurological things, but still, a sign his body is fighting for health. Kathy also reinterated the claim of the SF Big Cheese neurologist that the plasmapheresis had a 60% chance of working (where "working" means reducing the inflammation), and we should see effects within a week or two. (But if Armstrong is right and the swelling may ALREADY be gone, and Grant's condition isn't changing because his brain stem is permanently damaged ... AARGH!)
Dr. Kathy and the neurologist went to a conference on migraine yesterday, where there were a dozen or so well-known neurologists, and she asked them for input on Grant's case. She said they got some helpful advice. One proposal is to try cytoxan, a drug used in chemotherapy to suppress the immune system -- this if the tests show the inflammation is still there. Grant will have another spinal tap soon and another MRI. I would like some GOOD news!
I am very tired. You have all been so wonderful to me I hate to be a wuss and keep asking you for even more words of encouragement. But if there's anything you can think of, please send it on. Your notes really really help me. Send words for Grant, too! I think Grant might need encouragement: Armstrong doesn't even bother to leave the room before talking negatively about Grant's condition (and HE's the one who said Grant could probably hear!).
Love,
Grant Friday April 27
Dear Friends,
The coma has now lasted 27 days. Grant is stable, some fever last night and this evening (101.7). Because of the fever, they decided to do some more cultures. Most things are the same, though Grant seems more stiff and slightly more spastic today -- it's harder to bend his fingers and joints. He is often moving his mouth and bending both his legs inward.
Today the social worker started talking to me about where Grant will go if he is still comatose in a couple of weeks -- a weird and traumatic conversation. The ICU won't really be appropriate if he's over all his infections and just needs tube feeding and ventilator. Where do otherwise healthy comatose people live? Answer: "Sub-acute care" facilities. The social worker even had brochures. I am supposed to visit some of these places and pick one if things don't improve by next week.
No doctors around today. They did a spinal tap this morning but I haven't heard any results yet.
Love,
Grant Sunday April 29
Dear Friends,
Grant's temp was up to 103 again today, but it came back down pretty quickly, apparently, with Tylenol and the cooling blanket. I talked to one of the doctors (Dr. Armstrong's partner), and he said this fever might be one of several things: the syndrome, the pseudomonas infection, or a reaction to the Vancomycin. So he's discontinuing the Vancomycin. He said he hadn't decided exactly what to do about the pseudomonas. They call it a pseudomonas "infection" -- but of course I had to look it up on the net -- and it CAN cause pneumonia. But I don't think Grant has pneumonia: his oxygenation is close to 100% all the time, and he's not coughing up a lot of gunk (though there's more now than a few days ago). All the vitals are stable and "within normal parameters," as Data would say.
Neurologically nothing seems to have changed. In the last week, I've been seeing more eye movements, but nothing that could be definitely called voluntary.
The nurse showed me the report of his latest spinal tap. His spinal fluid white cell count is way down (to 6), close to normal. I don't know what that means, but it's a dramatic change compared to his earlier numbers (80 and 31). Tomorrow I'll probably talk to Dr. Kathy, and get some kind of interpretation. Maybe the plasmapheresis did something?
My mom is here now; she arrived Friday afternoon. It's nice to have her here. She's doing some cooking and generally holding down the home front, while I visit Grant and go to school. She visited Grant yesterday and her comment was “I thought he'd look sick.” (She's spent her share of time in hospitals and seen quite a few sick people.)
Peter, one of our little friends, who is in kindergarten,
wrote the following card (our street
name is
GRANT GRANT GRANT get to Shaty Avnoo SOON
My sentiments exactly!
Love,
Grant Monday April 30 -- he appears to open his eyes
Dear Friends,
We saw Grant apparently OPEN HIS EYES today, about half way, and keep them open, as if paying attention, for periods of several seconds on end. The neurologist was very happy about the spinal tap, and the eye-opening. According to the nurse, the neurologist said Grant seemed "much more responsive." The nurses noticed the increased responsiveness last night.
The neurologist put Grant on a new steroid specifically to reduce brain swelling. This evening Grant seemed more tired, and the new drug is also raising his blood sugar, so he's getting small amounts of insulin as needed. He had a fever of 101.4 when I left tonight -- not too bad, I guess.
He sure SEEMS more "with it" the last day or so.
Come on, Grant!
Love,
Grant May 1 -- More plasmapheresis next week
Dear Friends,
Here's the latest plan. The doctors had a pow-wow today. They were “very impressed” with Grant's latest spinal tap and general increased responsiveness yesterday. Dr. Kathy says even Dr. Armstrong was impressed (though I got a somewhat different story from the nurses). Anyway, the neurologist says signals are definitely getting through the brain stem (YAY!) although there's quite a lot of "static". They have decided to follow a protocol developed by a big cheese neurologist at UCSF: Decadron, another steroid specifically to reduce brain swelling (used in tumor cases), and another round of plasmapheresis starting in about a week. They estimate at least another three weeks (!) before we see anything like ordinary recognizable voluntary response.
Then the "recovery" -- I love it when they talk like that! -- should take at least another four months, some of which will have to be spent in a sub-acute care rehabilitation facility.
The docs reiterate the importance of stimulating him: talking to him, reading to him, playing music, etc. They say it's especially important during the next three weeks. He's still comatose and spiking fevers (103 again yesterday, more cultures today) -- in other words, very sick; and the plans I've related are the best-case projections. So keep those cards and letters and CDs and books on tape, etc. coming!
I can't begin to express how grateful I am for the support and encouragement you all have been giving me. So many people -- friends and casual acquaintances and complete strangers -- have been so unfailingly kind that I almost feel I've had a little taste of the fellowship of heaven that believers talk about. I get a big lump in my throat thinking about all your love and generosity and willingness to listen to my fears and give me hugs and e-hugs, in the midst of this prolonged nightmare. I hope I don't forget these lessons when things are better.
Love,
Grant Thursday May 3
Dear Friends,
I didn't send an update yesterday because there wasn't
anything new. Tuesday night Grant was coughing a lot, and there was a brief
scary “ER”-like commotion around his bed while two respiratory therapists and
the nurse gave him some kind of super-suction. They said it might have been a "mucus
plug". Anyway, whatever they did seemed to fix the problem. He has been
breathing well since then. (I have just looked up the word "mucus" --
vs the word "mucous" -- and
discovered they are different! The first is a noun, the second an adjective. ("Thanks
for sharing that,
He's still running fevers (up to 102-103), which are controlled by Tylenol and the cooling blanket (working fairly reliably now). The docs don't know why he's having the fevers: same story, ADEM or infection? They put him on another antibiotic just in case, and when I left today, they were drawing blood again.
I have to see the social worker again tomorrow to talk about sub-acute facilities, insurance bills, etc.
I am tired and discouraged that I haven't seen any eye-opening or increased responsiveness since Monday. I was hoping things would take a turn for the better (which they did, of course) and then just STAY better. For the last couple of days, he's been much like last week: lots of mouth and eye movements. Not sicker, not better. Thanks to Marianne for the worry dolls; I can use them.
You all keep me afloat. Keep hanging in there and I will, too!
Love,
From: “
To: “bob johnson” <bobj45@flash.net
Subject: How does healing progress in these cases, in your experience?
Date: Thu, May 3, 2001, 2:35 PM
Grant hasn't done any eye-opening since Monday, and has seemed for the last three days to be much like last week. Is it usual in cases like this not to see continuous progress? I can't help but be disappointed that he hasn't maintained the reactivity of Monday but maybe I am thinking in terms of the wrong time-frame. Have you seen similar one-step-forward two-steps-back kind of thing?
From: bob johnson [mailto:bobj45@flash.net]
Sent: Thursday, May 03, 2001 4:21 PM
To:
Subject: Re: How does healing progress in these cases, in your experience?
I think that with my sister it worked as if it were a matter of being on several plateaus. She was at first extremely agitated and screaming and biting her tongue and all curled up in knots. After a few days she stopped all agitation but remained, I think, curled up. Then they told us she had no brain waves other than those autonomic system waves. Then in the 2nd and third weeks we were looking for any signs of progress... which was never steady. No hope was given us by the doctors. But we who were staring at her for hours on end could see things that seemed like significant changes. These would come and go... maybe something like you are seeing with Grant. Then after 3 to 4 weeks the nurses told us they saw her look at them and try to speak. We didn't see this for another day or two. Finally she came busting out of it like a chicken out of the egg with clear wakefulness, and two words, "shit" and yogurt”. It happened while I was telling my brother and mother about a funny incident in high school when we placed a cigarette on a firecracker, making the cigarette into a 3 minute fuse. Of course we put the little surprise behind the bathroom stool in the men's room of an outdoor drive-in, got into the car and waited for the bang. Well, as luck would have it a cop went into the john.... the remaining minute and a half went by, and then KABOOMB! Another 2 or 3 minutes went by, and the cop came out, very slowly, dignity ruffled. At that my sister started to laugh.. then came her famous two words.. I think she was at that breakthrough threshold for several days. and I think she was on lower plateaus during the earlier weeks. I'm only guessing, but that's what it seems like to me now. If Grant seems to remain in one spot for a while, I would think that would be usual. And what may seem like a step backward could be a slipping back into a layer of sleep, just as we do when we are trying to wake up while watching a boring video tape late at night. I don't thinking waking up and falling asleep are gradual processes... more like a switch going off and on, or a series of switches going off and on.. so we fall in and out of sleep. Maybe Grant is doing something like that... and it may be happening like that.. off and on..up and down.. throughout the day. God only knows what is going on in these deep sleeps.
I don't think I know what hospital Grant is in. I assumed it was Valley Med. Good luck today, and don't neglect your own health. cheap advice, but important. You need sleep, and nourishment... and some time away from the hospital besides just going to school.
A big hug, Your friend, Bob
To: Bob
Thanks for your reply. Maybe he's just landed temporarily on some lower plateau, like you say.
Grant's in
From: bob johnson [mailto:bobj45@flash.net]
Sent: Thursday, May 03, 2001 1:04 AM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant May 1 -- More plasmapheresis next week
Hi
Boy this is good news! It does indeed sound like progress. "Signals getting through the brain stem" ... music to my ears! What a huge difference this is from reports last week... Of course the dangers are still present, but this is real progress.
It is hard to even imagine what you are going through while sitting, reading to Grant... I have memories of similar lonely tasks with my sister and Cheryl. Those are some of the very hardest moments... but you do keep on with it , and for whatever it is worth, I want you to know I have some inkling of how very hard it can be at those moments. It takes a lot of courage to keep up the faith... the reading, and the talking, and the hoping and "praying"...
You're not alone, though it must feel like it often times. We are all caring for you and for Grant. If only we could be closer, and more concretely helpful... but the real burden falls on you. So YOU ARE THE ONE that must take charge and be strong... and you ARE strong...through this whole ordeal... Doctors and nurses, friends and relatives can go home at night to their normal lives, but you can't. That's a mighty lonely feeling. This is like the longest, toughest marathon you'll ever have to run... at best we can try to infuse our care and concern into your spirit. I just want you to know, when it gets tough, that you are not all alone in this, for we all do really care. You are doing the hard stuff, but we are behind you as best we can be.
Anyway, Grant's conditon is clearly improving, and that is cause to be happy today and to hope for more improvement in the days ahead.
Your friend, Bob
Grant Friday May 4
Dear Friends,
Well, a pretty good day today, I guess. This morning Grant had his eyes open again, for about 20 minutes straight, and was blinking, and might even have been tracking ... ?? I'm not sure. He was much like Monday, seemed more responsive than the last few days, so I felt encouraged again. The neurologist showed up just in time to minimize hope -- said the eye-opening might be just reflex. But if it was reflex, it was at least a DIFFERENT reflex.
Today it seemed I could get him to blink and move his mouth and turn his head if I just persistently bugged him.
He is back on Vancomycin and another antibiotic, because his white bood cell count was high today. He seemed tired in the afternoon.
I spoke with the social worker about the general blooming
buzzing confusion of all the bills I've been getting. Get this: half the time
Hoping for more eye-opening and lower white count tomorrow!
Love,
Grant Saturday May 5
Dear Friends,
More eye-opening today! And not all in the morning (as all the other times this week).
Late this afternoon I was in the hospital cafeteria grading papers, and when I went back to the CCU, all
the nurses were very excited. "
I was especially happy this happened on Jeri's shift. Jeri is one of the nurses who has been particularly concerned about him and always takes extra good care of him. She told me the other day that she'd even had a dream that Grant woke up. I could tell she was extremely pleased and moved.
His temps were also good today -- highest only 100.3, no cooling blanket.
So I am sad that my Mom left today but happy about this.
Love,
Grant Sunday May 6
Dear Friends,
Well, it's been five weeks today since Grant went to sleep, and six days since he first opened his eyes. His eyes were open when I went in this morning, and he opened them again this afternoon for Dan and Barbie. All in all, at least a half hour of open eyes today, with blinking, but no obvious tracking. It does seem that with enough persistence, we can regularly get him to become more agitated, especially early in the day.
His temp was actually BELOW normal this evening! That's a first.
Love,
Grant Monday May 7
Dear Friends,
Stable vitals, not bad temps, and more eye-opening and spontaneous movement. Dr. Armstrong actually wrote something mildly encouraging in his notes.
Second round of plasmapheresis starts Wednesday.
Thanks to Marianne and Rhonda and Valerie at Adobe, I am feeling much less stressed about
Love,
Grant Tuesday May 8
Dear Friends,
Things seem to me to be pretty much the same today as yesterday. Betty Bates visited him at noon today and wrote that Grant had his eyes open "for quite a while" when she visited and that he seemed focused. Two of the nurses said they saw him with his eyes open "trying to talk" to me today. The nurses are excited.
I wish I could tell for certain. You know I teach critical thinking, (logic, epistemology, philosophy of science, etc.) and one of the things I'm covering right now in class is people's tendency to see what they want to see -- the good and the bad effects of that tendency. It's VERY hard to "objectively" interpret the stuff Grant does.
I'm choosing to be hopeful -- though I'm not sure that makes any sense in the first place, and I don't know how much choice I'm exercising anyhow (I think a lot of this sort of thing is chemicals). But I figure hope can't hurt, might help, and feels better than despair. It's nice to see his big brown eyes anyhow.
They're wheeling in the big machine tomorrow to start rinsing out his blood again.
Love,
Grant Wednesday May 9
Dear Friends,
Today Grant had his eyes open a lot -- the entire time I visited him this morning, and at least a half hour this afternoon. I have been skeptical about the significance of his eyes being open, but today at times I felt a human connection -- me looking at him, and him, with a perfectly intelligible expression on his sweet face, LOOKING BACK AT ME. Maybe I'm dreaming, but it made me feel good.
The neurologist is happy that Grant's oculocephalic reflex ("doll's eyes") is normal. That is apparently a very good sign. Even Dr. Armstrong now seems to hold out a chance of full recovery, though of course he also mentioned some truly chilling worst-case scenarios.
They didn't start the plasma exchange until mid-afternoon, today so Grant will probably be tired tonight. Tomorrow may be interesting.
Oh, and I almost forgot to mention that Grant's temps have been almost normal for the last two days in a row!
Thanks to all of you who keep writing and visiting! According to Dr. Kathy, these next three weeks are an important window period for "providing stimulation". So if you feel like writing to Grant or just sending on jokes or gossip, please don't hesitate.
Love,
Grant Thursday May 10
Dear Friends,
Today was much like yesterday. Grant seems much more "with it" earlier in the day -- eyes open for long periods, up to a half hour or more.
Almost normal temps again today. Dr. Armstrong saw Grant early this morning (the first time he's seen him early) and was pretty happy. He said these three days in a row of good temps might mean the ADEM is finally waning.
More plasmapheresis tomorrow.
Love,
Grant Friday May 11
Dear Friends,
Big day for Grant today: the second plasmapheresis, a new room, AND --- no more MRSA infection! So we don't have to wear the canary dresses and green gloves anymore. He's still in the CCU, just a few doors away.
He actually got moved BECAUSE he got three negative MRSA cultures in a row. They now do a "terminal disinfection" (!) of his old room.
And good temps again today -- 4th day in a row! Some eye-opening this morning, and again this afternoon, nicely timed to impress Dr. Armstrong.
We're hanging in there.
Love,
Grant Saturday May 12
Dear Friends,
Good news! Grant is now breathing on his own.
I did not realize it, but they have been "weaning" him from the ventilator for the last couple of days. He still gets backup oxygen if he needs it.
Today I cut his toenails and his feet twitched A LOT -- more than I have seen before.
I played a CD of sound effects (running water, babay crying, jackhammer, toilet flushing, animal sounds, etc.). His eyes stayed open. Maybe he was intrigued???
Love,
From: Bruce Bullis [mailto:bbb@Adobe.COM]
Sent: Saturday, May 12, 2001 5:35 PM
To: sandy Subject:
Sorry, I can't come visit this weekend...
Sandy, could you send me some convincing facts to tell my wife so she isn't terrified of me giving Noel (our 2 yr old) one or more of Grant's infections? She's very uneasy about the prospect (and used her Mother's Day privelege to insist I not visit until I got some reassuring news)...
(sorry)
-
To: BB
RE: Sorry, I can't come visit this weekend...
Bruce, I can give you what facts I know. Grant is free of the drug-resistant staph. The only infection I know he still has is pseudomonas, which, according to the net, is "ubiquitous" (i.e., everyone has it already but he has more of it). He is now out of isolation, which means the hospital is no longer concerned about visitors infecting other patients, and visitors don't have to "gown up" anymore. As far as I know, Grant's only real problem now is neurological.
However, hospitals are indeed full of germs. If you take the proper precautions (hand-washing before and after seeing anybody), you'll probably be okay. Most of the nurses who take care of Grant have kids, and they were surprised when we asked if it would be okay for people with kids to visit (their response was "If they're not sick, sure!"). But of course there are no guarantees.
I like to believe there is a "good karma" fairy that protects people doing good deeds, but I can't say I know that.
I am very fond of several two-year-olds myself, so I would not want to do anything that could possibly endanger Noel. If I were Noel's mom, I might feel the same way she does. Enough people are worried around Grant's situation already. There's no need to cause more anxiety to anyone, even if the anxiety is not warranted -- and in this case, it might BE warranted. So don't YOU worry about it either. You're doing fine by me already.
Grant Monday May 14
Dear Friends,
I didn't see much movement or eye-opening today -- not nearly as much as yesterday -- but everything else continues to be stable. (Grant had the third plasmapheresis Sunday; maybe the treatments are beginning to tire him out. My brother Dan says Grant got like this during the last round.) Grant is still breathing on his own; they even moved the ventilator out of the room, so there's more space, and less heat.
I would have called this a good day a month ago. Now that he's been opening his eyes every day, I am even more anxious for him to wake up!
Love,
Grant Tuesday May 15 -- Dr. Armstrong's note
"Some slight voluntary movement"
YIPPEE!!!!!"
From: Marianne Deaton [mailto:mdeaton@Adobe.COM]
Sent: Wednesday, May 16, 2001 1:58 PM
To: Martin Newell; MeMe Rasmussen; Greg Gilley; Bryan Lamkin; Michael Kaplan; Bill Hensler; Jon Ferraiolo; Bruce Bullis; Mary Wright; jdeaton@art-render.com; sandy_lafave@westvalley.edu
Subject: "cautious optimism"
I'm not sending this to the whole FOG [“Friends of Grant” –
an email list at Adobe, where Grant worked] list, just to a few of you who've been
deeply involved (and Sandy, of course).
I'll wait for
There's no doubt in my mind that he's awake and doing his damnest to respond to us. His eyes were open a lot and moving and blinking and he's definately responding to physical respiratory distress (not horrible distress -like when he coughs). He visibly responded when he first heard my voice, throughout our conversation and also again when we said good bye. He looks like he's trying really hard to do something we can see. The nurse who sees him everyday also said she thinks he's coming around and was asking me for validation that I saw it too.
I know the light at the end of the tunnel is still a little far away but he's changed a lot in the last couple days and I'm so glad he seems to be back with us.
Geez, now I've got to start finding intelligent things to say to him instead of sitting there whimpering about how much we miss him...
Good luck with your visits coming up and let me know that you see the same great changes, okay? I'll try to see him again over the weekend... maybe Greg will let me tag along tomorrow.
Marianne
Grant Wednesday May 16
Dear Friends,
I have had a very good feeling the last day or so. Marianne said the same thing after visiting him today. Yesterday afternoon, this morning, and briefly this evening I have felt that Grant was awake and responding to my words (things like "open your eyes," "blink," and "stick out your tongue"). His eyes are mostly not tracking, but occasionally he even seems to respond to "look at me"!
He often has a pretty nurse, who seems to be Russian (she sounds it and she said he looked like
Marx). Her name is Faina (fa-EE-na). She
is a real sweetheart. She is married to
a programmer also. Today she began to
speak to him -- I was on the other side of the bed -- and he turned his head very
deliberately and attentively (so it seemed) in her direction. I
said, "Grant, is Faina your girlfriend now?" Faina was a little
embarrassed (she said, "
Oh, and yesterday Dr. Armstrong patted me on the back and said "He's responding."
Love,
From: YAudebert@aol.com [mailto:YAudebert@aol.com] Sent: Wednesday, May 16, 2001 3:44 PM To: sandy_lafave@westvalley.edu Subject: Message from Gia
Hello Sandra, I hope that you feel better today. I just want to let you know my e-mail address in case you want to talk. I will not take a Philo class next semester (because the schedule doesn't work for me). So in case you feel embarrassed (a student !!) ..... Four years ago, I was so miserable, lost, full of doubt and people kept saying "how can you be so strong". That's why I just want to help. An "invisible", anomymous (?) helper in case you need. Besides, I really think that you need to do something (I don't know what, I don't know anything in psychology, I just have my instinct and it told my that I had to come back in your office yesterday). I hope that it was helpful. That's all for now, because I don't want to bother you either. Fell free to call, e-mail, feel free to ask me to cook French or Vietnamese dishes (I'm an average cook, but I will try). Bye
RE: Message from Gia Dear Gia,
Yes, I feel much better today. When I left you yesterday and went to the hospital, Grant seemed much more responsive. He was very good this morning also. And even the most pessimistic doctor said some encouraging words.
You were so kind to me yesterday. Thank you so much. Your psychological instinct was perfect -- and you were right that it would cheer me up to see your adorable daughter and listen to some French. I did understand almost everything, but I am very shy about speaking.
See you tomorrow, and thanks again.
Grant Thursday May 17
Dear Friends,
Grant had his 5th plasmapheresis today and was pretty quiet. I have to keep reminding myself that he's on his OWN schedule, not mine.
Although Grant is hardly conscious, the social workers are
all abuzz about his "discharge planning". There is a sub-acute place in
(1) We can visit easily, and our visits seem an important part of his recovery.
(2) He can keep the same doctors.
However, the social workers say there are only 20 or 30 sub-acute facilities in
I was extremely concerned about this today. Dr. Kathy said not
to worry. Apparently she and Dr. Armstrong both want him in
It's not an issue yet, since Grant will be in
Love,
Grant Friday May 18
Dear Friends,
Well, his temps have been higher the last couple of days -- up to 101.9 -- so they did some cultures yesterday and it turns out he has another infection. This time it's strep -- not a drug-resistant kind, I gather -- so he's back on antibiotics. I think that's why he seemed sick to me last night; his heart rate was also pretty high.
Today he seemed sick and sleepy to me, but this evening he seemed better, though his temp was still around 101. He opened his eyes a lot for Martin and me, and seemed to try to keep them open when we asked him to. Maybe the antibiotics started kicking in.
Anyhow, no big changes, I guess. He's having an MRI Tuesday so we'll get some idea how things stand neurologically. Keep up the letters and good thoughts and prayers!
Love,
Grant Saturday May 19
A very good day. No fever, and eyes open -- and tracking -- throughout the day! Dr. Kathy and Dr. Armstrong are both excited.
Love,
Grant Sunday May 20
Dear Friends,
Grant seemed quieter today than yesterday, in the sense that he didn't open his eyes as much. He did open his eyes and track in the morning for me and Greg Wilensky, but seemed sleepy later in the day. However, I did notice movement in his arms -- this is new. I have not seen any movement in either of his arms since all this began. His left arm went into a kind of mild shaking spasm for about a minute. I think I read someplace that spasticity often accompanies return of function. I also thought I felt definite resistance when I "ranged" his right arm -- not the sort of reflex he does when he coughs, but a pushing back. It's as if he is just starting to re-establish connections, but everything's still mostly noise -- not much signal.
They are moving him tonight to yet another room, this one in the ICU, which is down the hall from the CCU. I haven't seen the new room yet, but it sounds very nice; Jeri says it is bigger and has a window.
Love,
Grant Monday May 21
Dear Friends,
The last plasmapheresis of the second series was today.
Tomorrow another MRI. If the previous MRIs are any indication, they'll have the results pretty quickly afterwards.
Grant was in his new room today, looking kind of grumpy and sleepy (the new room is not as well air-conditioned). He opened his eyes a little and seemed to orient toward me briefly.
They removed his central line today because he's not getting many meds anymore, and put a regular IV in his hand. His blood sugars are getting back to normal as he eases off his steroid. Medically, he's getting very stable. Neurologically, it's going slowly -- slowly but surely, I hope...
Love,
Grant Tuesday May 22
Dear Friends,
No MRI today; now they say tomorrow (Wednesday).
The neurologist was in this morning. He's been out of town for the last week or so, and was very pleased with Grant's progress. He said he could really see a difference.
I could too today. Grant seemed to notice the window for the first time. Also, he had more spontaneous leg movement than I've seen before. And his feet seem very ticklish.
I went to
We're hanging in there.
Love,
Grant Wednesday May 23
Dear Friends,
MRI done this afternoon; results tomorrow. I gather the MRI was done as a matter of routine and not because they suspected any problem.
Another spinal tap soon.
A pretty sleepy guy today.
Love,
Grant Thursday May 24
Dear Friends,
The MRI results show Grant's brain stem swelling is down, and there's been no spreading to other parts of the brain. That's what we were hoping for.
All he has to do now is wake up!
Love,
Grant Friday May 25
Dear Friends,
Grant had a spinal tap in the early morning -- I guess that woke him up. I haven't heard any results.
His eyes were open and tracking quite a lot today. I brought in a mirror and showed him his reflection; he definitely looked interested.
Love,
From: Madan Valluri [mailto:mvalluri@valluri.com]
Sent: Saturday, May 26, 2001 9:47 AM
To: sandy_lafave@westvalley.edu Subject:
RE: Grant Friday May 25
I heard about Grant earlier this week from Chuck Runge. Thank you for adding me to the email distribution.
Is it possible to visit Grant?
/Madan
RE: Grant Friday May 25
Madan,
Yes, you can visit him.
He's in the ICU at
He is on tube feeding and has a trach tube in his throat so he couldn't talk back even if he were fully conscious. Be prepared. He looks pretty good, but all the equipment can be kind of a shock.
Let me know when you plan to go so I can tell the nurses. The
posted rules say only immediate family can see him; I have never seen that rule
enforced, however. I know the nurses will let you in if they have advance notice
from me. If you want to visit on a regular basis, Martin Newell (
Grant will be recovering for at least another six months, so there will be lots of opportunities to visit. He is going to be moved to a sub-acute facility (I don't yet know which) in a couple of weeks or so. When I find out, I'll let everyone know.
Grant Saturday May 26
Dear Friends,
Can you believe it's been eight weeks?
The spinal tap results were good -- he continues to improve.
Grant was looking around again today, though not as much as yesterday. I got the radio working well -- not easy with all the machines in the room -- and played some NPR stuff: "Car Talk" and "Wait, Wait Don't Tell Me" and "This American Life". We always listen to those programs on the weekend. I also talked with Dr. Kathy for a long time. She and the other doctors continue to be optimistic about possible full recovery.
I wish he would just wake up!
Love,
Grant Sunday May 27
Dear Friends,
Grant seemed pretty awake for several hours today. He opened
his eyes and tracked today to the point of turning his head and re-focussing
when I walked to the other side of the bed. He looked at both me and his nurse Nancy when we said "Look at me"
-- I mean he REALLY looked, made eye contact, seemed to know who was who. He
looked out the window with apparent interest, and also looked at photos and cards I held in
front of him. His hair had been getting pretty matted, so
I talked with a neurologist who doesn't usually visit him. (She is the backup for Dr. Armstrong's backup.) She hasn't seen him in four weeks, and was impressed; she said he's made a lot of progress, and is "much better".
I wonder if his condition still counts as coma. I mean, I still can't wake him up, but he does seem to "wake up" by himself, especially in the mornings. He's been "awake" for at least an hour a day for the last three days. As far as we can tell, he still can't voluntarily move his arms or legs, but the doctors say that's not necessarily going to be permanent. More signals seem to be getting through the brain stem all the time.
He's also off all antibiotics! So if you visit, be especially careful about hand-washing, and (of course) don't come if you're sick!
I am out of school now, so if you'd like to call me, use my home number or cell. I won't be regularly picking up phone messages at school. Thanks to Grant's excellent system administration of punkalunka, you can still email me at sandy_lafave@westvalley.edu, and I will receive that mail from the punkalunka machine. (sandy_lafave@punkalunka.org also works.)
Love,
Grant Monday May 28
Dear Friends,
I guess Grant isn't so medically stable after all. Today he spiked a fever of 104.8! "Spiked" is the right word for it. It came on fast, within a couple of hours. That's the highest temp I recall so far. They gave him Tylenol and got out the ice bags and the cooling blanket. It was a strange day at the hospital because hardly anyone was around (Memorial Day).
Because doctors couldn't be found, no orders could be given. Grant managed to get the fever down himself, down to 102.2 by 6 PM. But it was up again to 103.4 two hours later.
They were restarting antibiotics when I left. They think this fever must be some kind of infection, since it started up again so fast after the antibiotics were discontinued a couple of days ago. Apparently this happened the last time they stopped the antibiotics also.
On the plus side, he was making lots of eye contact and tracking, and, I thought, even smiling.
I was -- and still am -- frightened and discouraged; I had thought the fevers were over.
I hope the fever is down tomorrow. I left him in Faina's capable hands, and she seemed confident.
Love,
Grant Tuesday May 29
Dear Friends,
Can you believe Grant's been out of it for 59 days? I asked Dr. Kathy whether he's still technically comatose, and she said there's no precise term for his current level of awareness -- you could say an "altered state of consciousness". Well, I like to see the word "consciousness" in there, don't you?
The big fever of yesterday is apparently no big deal. He does have a new infection (clostridium difficile), but it's a side effect of the antibiotics he was taking last week. So get this. They were giving him vancomycin, which had the bad side effect of wiping out all the good bacteria in his digestive tract. So then a whole lot of BAD bacteria started growing, which shot his temperature up, and so now to zap the bad bacteria, they're giving him -- yes, vancomycin! This seems wonderfully circular to me, but it seems to be working! His temp was down to 99 today and he seemed much better than yesterday.
Tomorrow he is having a little surgery -- probably mid to late afternoon -- to put a feeding tube in his stomach (called a PEG -- "percutaneous endoscopic gastrostomy"). He needs to have an empty stomach for the procedure tomorrow, so they're discontinuing his tube feedings tonight. This means he'll probably be "Sleepy Grant" all day tomorrow -- weak from hunger early in the day, and later getting over the anaesthetic from the procedure. They're putting in the PEG because the nose tube is pretty irritating, and the PEG will enable him to be moved, exercised, etc., more easily.
Send him special strength tomorrow.
Love,
From: Craig C. Forney [mailto:cforney@mbird.com]
Sent: Tuesday, May 29, 2001 1:32 PM
To: sandy_lafave@westvalley.edu
Subject: Grant
Hi! I heard that Grant was in the hospital and not doing well. I am very shocked and sorry to hear that. I can't imagine the impact this is having on you.
I just wanted you to know that there was one more person out there who cares, for what it is worth.
I'd like to know how things are going, if it isn't too much trouble. Madan told me you are providing some status information, and I'd like to be included if possible. I'm pretty sure there is not much I can do to help, but if you think of anything, I'd like to hear.
Thanks,
Regards, Craig
RE: Grant
Thanks, Craig. It's really been a nightmare. Grant's actually doing much better, and they're giving him a 60% chance of full recovery, but it's going to take a long time (at least a year) even in the best-case scenario. The worst-case scenarios are pretty chilling too.
I am learning more than I ever wanted to know about the brain, and critical care nursing, and other unfamiliar worlds: ICUs and CCUs; insurance billing (very arcane); short-term disability and long-term disability; social workers; Social Security disability payments; sub-acute care facilities vs skilled nursing care facilities vs unskilled nursing facilities, etc.
I am learning even more about the depths of human kindness, fellowship, and solidarity.
So this is what it's like to be a grown-up. If he gets better, it'll all be worth it.
Grant Wednesday May 30
Dear Friends,
The PEG insertion went fine, but Grant still has to use the feeding tube in his nose for a few more days, until the PEG “matures” -- I imagine that means until they're certain it's positioned right, not infected, etc.
He's developed an infection in his left arm from the IV. His arm is really swollen and red and obviously sore -- he really reacts if you try to lift it. His reaction is a very good sign, and nobody seems concerned about the infection.
Grant was kicking his right leg pretty high today, and apparently this was NOT merely a spinal reflex.
He was opening his eyes and acting perfectly “normal” only two hours after the surgery! Not Sleepy Grant at all!
Love,
Grant Thursday May 31
Dear Friends,
Almost June -- I can hardly believe it. Nothing much to report. A tech came in and did an ultrasound of his heart; she said she was looking for “vegetation”. Apparently his cultures show he still has some kind of infection, though his temps are okay.
He seemed tired today. He opened his eyes many times and looked at me, but never for more than a few seconds. It was very hot outside and the AC in his room doesn't work well. Even if he were fully conscious, he'd be grumpy in that room.
The weather is cooling down tonight, so I hope he's more frisky tomorrow.
Love,
To: Jim Mull (college friend living back East, who organized a group of old college friends and sent me a book of Diego Rivera’s art)
Dear Jim,
I was very moved that you all thought of me and showed your thoughtfulness in this very beautiful way.
Grant continues to be comatose, but his coma is getting “lighter”. He opens his eyes and tracks. He does not speak but moves his mouth as if trying to. He is quadriplegic -- i.e., has no apparent voluntary control oif his arms or legs -- but that may not be permanent. He continues to get infections, since his immune system is very weak.
I am pretty wrecked. Some days I just cry all day.
The doctor filled out his disability paperwork yesterday and wrote that his anticipated date of return to work would be July 2002! I suppose that might be hyperbole for the insurance companies, but it's much longer than I'd been told.
You can see him and me in the welcome page at http://www.punkalunka.org I think he looks a lot like Louie would have at 52!
From punkalunka, you can see photos of our house in Aptos,
near
Thanks again to you and Bert and Cheryl and Terry and Janet and Leo.
Love,
Grant June 1 Friday
Dear Friends,
Grant was a bit perkier today. He seemed to notice the TV briefly. Dr. Cathy said she thought he seemed “brighter”. He had a temp of 100.9 when I left tonight at 9 PM; I hope it doesn't go up.
The social worker announced that the sub-acute in
Grant always looks at me now when his eyes are open and I say “Look at me.” He looks me right in the eyes. I don't know how aware he is, but his look just moves me so much. Then he closes his eyes and is gone awhile. Then he opens his eyes again.
Love,
Grant Saturday June 2
Dear Friends,
Sleepy Grant this morning, but more alert this afternoon. He was moving his head much more than I've seen, from side to side. Temps and heart rate lower. I felt good when I left tonight.
Love,
From: Mandy Benham [mailto:mandyfrance@yahoo.com]
Sent: Sunday, June 03, 2001 2:18 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant Saturday June 2
Marshall Here - intruding on Mandy's email - actually we kind of use this as the family mail box.
Thanks so much for the daily updates - the kids regularly ask us to upodate them and we usually say a few words to the big guy at prayer time for Grant and you.
I am coming to SCLA soon and would like to visit Grant and you if possible and convenient. I could come probably Tuesday June 12th or Wed June 13th evening. Would that work for you?
Let me know.
RE: Grant Saturday June 2
Sure,
See you soon!
From: Craig C. Forney [mailto:cforney@mbird.com]
Sent: Tuesday, May 29, 2001 10:12 PM
To: sandy_lafave@westvalley.edu
Subject: RE: Grant
Thanks for the information. I actually have some of the same experiences. In 1978, my brother (5 years older than I) had an automobile accident (he had been drinking, was driving a friends Porsche, drove off a cliff, and was thrown out -- not wearing a seatbelt). It was at night, but somebody saw his headlights go off the cliff and alerted authorities. His head hit a tree and his skull was pulverized on top about the size of a softball (he now has a fiberglass repair), and messed up along the side. Massive brain stem injury (as well as a double stroke). He died and was revived a bunch of times on the way to the hospital. Talk about a bad day ...
Anyhow, he was unconscious for about 6 weeks in ICU
(remember, this was 23 years ago ... actually May 26, 1978 ... I usually call
him on his anniversary, I forgot this
year ... their ability to keep someone alive through that process was limited
back then). For the first two weeks, he was
on total life support and they did not expect him to live (the doctor said less
than 10% chance AFTER he started breathing on his own). Then on July 4, 1978, we flew down in an air
ambulance to
Anyhow, after a time, I realized that all his moaning and horrible noises were an attempt to talk. I was assured by the doctors that it was unlikely that he would recognize me, and that he would probably have no long term or short term memory. I started to understand him, and he could move his right hand a little, and so I guessed letters, and he squeezed my hand when I guessed the letters right on the words I couldn't understand. We got through about 10 questions/answers an hour. As far as I could tell, he was himself. After I explained what happened (nobody had done that since he had more or less become conscious, because everybody thought he was gone), his first question was “What happened to the car?” He felt bad that he had wrecked his friend's car ... this was consistent with his gentle, caring nature. They later tested his IQ, and I remember it being over 140. Not sure what it was before the accident, but he came out more or less complete in that department.
Anyhow, after about a year in
Anyhow, I'm sure you didn't want to hear all this, but I had some incredible experiences and met some incredible people (good and bad) through this whole thing. But the one conclusion I came to is that you need to take care of yourself and your own. Others try their best, but sometimes it is just not enough.
All my best,
Craig
RE: Grant
Craig, I had no idea about your brother. My heart goes out to you too. I'm glad to hear he made it, and can live on his own.
I think you are so right that people in the hospital often
do the best they can but you still have to watch out for your loved ones. Poor Grant has a huge
bedsore now on his butt (how did that happen???); I finally insisted that they
teach me to suction him myself. And everyone says
Anyway, I know it sounds like a cliche, but thanks for sharing. It helps.
Grant Sunday June 3
Dear Friends,
Poor Grant can't get a break. Now he has a HUGE bedsore. The docs and nurses are paying close attention, but how did this happen in the first place???? Nobody seems surprised, but I thought they were taking all possible precautions.
He seemed subdued today. He has little to no fever, though his heart rate seems high (120) -- could he be in pain from the bedsore, I wonder? The nurses suggest the high heart rate may be simply that he is more conscious and feeling anxious. The heart specialist has looked in, but apparently hasn't found anything wrong.
I'm sad and discouraged.
Love,
Grant Monday June 4
Dear Friends,
Grant opened his eyes long enough to look at some pictures today -- for the first time in several days.
Because of the bedsore Grant has to lie on his side, so I can't exercise him as well; one leg is on top of the other. And since his head is always pressed down on one ear, I hesitate to put on the headphones for music and tapes. Any suggestions? I've been leaving the radio and TV on.
The nurses call the bedsore a “D-cube”, for “decubitus”. Dr.
Armstrong has classified it as “ulcerative necrotic” and it looks every bit as
yucky as that sounds. They turn him
every two hours, to take pressure off, and prevent any more problems. If there
is a good side to this, it's that they're not going to move him to the sub-acute
until the “D-cube” is healed, which gives us some time to wait for a place to
open up in
I've been busy getting paperwork done for the various disability insurances. Valerie Dua and Rhonda Williams at Adobe have been a big help. Thanks!
Love,
Re:
Hi Cathy,
I went over to Winchester Convalescent today and roamed the
halls for awhile. I didn't like it nearly as much as
I guess if it came down to a choice between
I feel guilty and self-indulgent about this negative reaction, especially since you went to special efforts on my behalf. I'm really sorry.
I sure hope Grant can get into
From: KRRCHALL@aol.com [mailto:KRRCHALL@aol.com]
Sent: Tuesday, June 05, 2001 6:19 AM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant Monday June 4
Just read your update from Monday. Regarding headphones, there are single-ear earphones (or earphone) that I'm sure will plug into any standard player. Radio Shack would have them, if anyone. I'm sure I have one around somewhere. I'll try to find it and bring it out to WVC with me this morning (as I'm taking Don's course this week). If I find it, I'll put it in your mailbox. Actually, let me go look for it now.
Well, I did find it, along with an “enlarger jack” that will enable it to fit the larger receptacles of larger players. Anyway, I'll put it in your mailbox. Or again, if you aren't going to be around school, try Radio Shack.
Thanks for adding me to your list of people to whom you send updates. I think you are a real Ubermensch.
Good wishes, Roger
Grant Tuesday June 5
Dear Friends,
Today Grant was so alert that he and Dr. Gould (the neurologist) had a kind of conversation!
____________________________________________________________
Dr. Gould: Grant, this is Dr. Gould. Look at me.
(Grant looks at Dr. Gould.)
Dr. Gould: Grant, open your eyes as wide as you can.
(Grant opens his eyes wide.)
Dr. Gould: Move your eyes to the right.
(Grant moves his eyes to the right.)
Dr. Gould: Blink one time.
(Grant blinks one time.)
Dr. Gould: Blink two times.
(Grant blinks two times.)
Dr. Gould: Blink once for yes, and twice for no. Do you understand?
(Grant blinks once.)
Dr. Gould: Do you
know you are in
(Grant blinks once.)
Dr. Gould: You had an infection in your brain, and now you're getting better.
(Grant falls asleep.) _______________________________________________________________
I wish you all could have seen this. It was amazing! Dr. Gould was plainly delighted.
Grant got 2 units of blood today; he's anemic again. He may have a stomach ulcer. And the “D-cube” is still gross.
But there's been clear neurological progress!
Love,
From: Bill Hensler [mailto:bhensler@Adobe.COM]
Sent: Tuesday, June 05, 2001 10:24 PM
To: sandy_lafave@westvalley.edu
Subject: Grant this evening
Twice this evening while Grant was awake and watching me he responded to questions with a prompted “Blink once for yes”. My first question was “Can you hear me.” I was so surprised to see Grant watching me as I looked up from the magazine I was reading to him I blurted out that inane question. His response seemed as forceful as a blink can be. One hard blink, yes. I continued to blather on for a few minutes more before the effort of listening to me wore Grant out. He closed his eyes again. About 30 minutes later Grant was coughing, again looking up from the article in the New Scientist I was reading aloud I saw Grant watching me. I asked if he would like me to get a nurse to clear his throat. Grant seemed to blink once for yes. Not as forceful this time, but the timing was right for a response so I rushed off to get a nurse. Grant was asleep again by the time I was able to coax a nurse into Grant's room. After his throat was cleared Grant's pulse went down so I assumed he was drifting back to sleep.
Two good blinks! Go Grant!
Bill
Grant Wednesday June 6
Dear Friends,
An amazing day! Grant was even more alert than yesterday.
Our neighborhood children have written Grant many cards and letters, some of which are hanging in his room. I have shown these to Grant often, but today he SAW them.
One, in bright pink, says, in big letters:
"Dear Grant, I am sorry to hear that you are sick. I miss seeing you aronde the nagh bor hode. I hope you get better soon. Love, Matt." Matt pasted a photo of himself at the top. (Note to Mandy: Matt is Becky's son on Collins. I don't remember their last name, but could you be sure to tell Becky?)
I held Matt's card up for Grant to see. His eyes followed the lines of print, and then he SMILED! A real live genuine smile! I think he would have chuckled except for the trach. I just about fell on the floor. I haven't seen that smile since the end of March.
I wrote things on a clipboard in big letters and he read those also (tracked each line with his eyes and responded appropriately). He smiled several other times also.
We knew that Grant could see and hear. Now we know he can read, and that he still has his sense of humor!
YAY!!!!!
YAY!!!!!
Love,
Grant Thursday June 7
Dear Friends,
Grant smiled again today at photos. He smiled especially at a photo of Kate Boccone (one of our neighbors' children who will soon turn four). He also smiled at photos of himself with poison oak last year.
I love that smile!
Love,
RE: OK for lunch on Friday
OK -- see you then. I am very sad today.
I talked with one of Grant's doctors this morning [June 8?], who said Grant will probably be quadriplegic (unable to move his arms or legs) for the rest of his life. This sounds grim and terrifying and very sad. Grant has always been a big strong independent guy.
(I did not share this info with whole list until much later.)
Grant Friday June 8
Dear Friends,
There's nothing much to report today. Grant is clearly waking up, but it's not like in movies when people wake up from coma fully conscious and articulate (apparently that's the exception). Grant continues to look around and seems interested in photos. I wish I had more photos of people he knows.
Could somebody at Adobe go around with one of those instant cameras and bring in photos of people Grant knows? And label them, so he can read the names with the faces and get reading practice too? I think this would be a great thing for him right now! Photos of neighbors and family would also be welcome. He seems to especially enjoy pictures of our “little friends.”
I have another idea also. Could someone who visits regularly with access to a color printer also print the punkalunka pictures occasionally? I think he'd like to see those too. I'd do it myself but our color printer is in Aptos.
Thanks so much for all your emails of support! They really help me.
Love,
Grant Saturday June 9
Dear Friends,
Grant's been in the hospital ten weeks today.
When I came in this morning around 10:00, Grant had his eyes
open and appeared to be watching the TV (nurse
He is clearly more awake. He doesn't struggle as much to keep his eyes open, and he looks right at people and things. Leslie (Grant's sister) was in this morning, and as we spoke, his eyes shifted from one of us to the other depending on who was speaking.
I brought in some more photos -- our wedding pictures and some trip pictures. He looked with interest.
If you haven't seen him in a week or so, you'll notice a real difference!
Love,
Grant's prognosis
Dear Bob,
According to Dr. Armstrong, Grant is going to be a quadriplegic.
Armstrong told me this Thursday after the two good days, and I haven't put it in the updates because (1) it's Dr. Armstrong (who always gives the worst possible scenario); and (2) I haven't got the heart to tell people, especially his parents. I feel all this drama is becoming tiresome.
Today (Sunday) his gastrostomy is infected, and the bedsore is still bad. His heart rate has been 120-130 for the past 5 days, continually. He hasn't smiled since Wednesday, though he's been awake a lot.
I am not doing well. I don't know if I have the strength for this. He seems to be getting more infections all the time. I keep thinking he's not going to make it, and -- much worse, to me -- I am sort of relieved at that thought. (Maybe it would be better ...?) I'm crying so much I'm afraid he'll see (his eyes are open a lot now), so I don't want to go to the hospital. But I feel terrible if I don't go.
I'm trying to be a Buddhist about all this, and give up desiring anything but then I think about some little thing (I see his writing or his wallet, or his clothes) and I grieve.
You are the only person I know who I can imagine understands these feelings. I'd be interested in anything you might have to say.
Could we talk on the phone sometime maybe?
Grant Sunday June 10
Dear Friends,
Grant has another infection, this time in his PEG (feeding) tube in his stomach. Dr. Armstrong put him on another antibiotic, and started some cultures.
His heart rate is even higher. It was 140 when I left this evening. It's been high for a week now. I asked one of the doctors about it; she said it was "stress". Oh.
His eyes were open and he seemed alert a couple of hours today, though. He often seems to be mouthing words. I wish I knew what he was trying to say.
Love,
Grant Monday June 11
Dear Friends,
Grant was pretty much the same today. Faina was his nurse and he did that funny turn-and-stare when she came in and started to talk.
Things are looking up a little for
All his doctors are going on extended vacations. I guess they all have backups.
Grant finally got seen by the skin specialist today, who prescribed some new ointment for his D-cube. She was on vacation last week also.
Grant looks cloudy and grim. I imagine he's beginning to realize he can't move, and he's pissed; I know that look!
Love,
Grant Tuesday June 12
Dear Friends,
No changes today, as far as I can tell. Eyes open at least 4 hours, off and on.
Love,
From: David Simons [mailto:dsimons@Adobe.COM]
Sent: Wednesday, June 13, 2001 10:43 AM
To: sandy_lafave@westvalley.edu
Subject: alphabet board
Hi Sandy,
Glad to hear Grant is communicating more!
Have you tried using an alphabet board so he can spell messages?
Thanks for all the email status reports, I feel much more connected to Grant. Please say “hi” for me, and let him know After Effects 5.0 had a record quarter!
Thanks, DaveS
RE: alphabet board
Hi Dave, I'm not sure what you mean by an alphabet board. Could you explain more? I can't think of a way he could “point” to letters -- he currently is unable to use his arms or legs at all.
I've brought in a big Morse code table, which, if he is VERY awake, he can use to blink out a letter or two.
Cheers
Grant Wednesday June 13
Dear Friends,
Grant was more alert than ever today. His eyes were open and he was looking around with great interest for at least six hours.
He breathed totally on his own most of the day also -- no extra oxygen. He got a Passy-Muir valve on his trach which will enable him to speak, but he has to re-learn the muscular components of speaking. (Eventually he will lose the trach altogether, but he still needs it for pneumonia prevention.)
He had his first lesson with a speech therapist today, and apparently he followed directions pretty well, and was producing growls. The joint that links the head to the jaw (the temporomandibular joint) is pretty stuff from lack of use.
Tomorrow he starts occupational therapy and the first goal is to teach him to swallow. That's a pre-req for losing both the trach and the feeding tube.
Some of you know, of course, but I was totally unaware that after 10 weeks of lack of use, you can't simply REMEMBER how to talk and swallow, but I gather you can't. Amazing.
Love,
Grant Thursday June 14
Dear Friends,
Today I wrote a long letter to the head of the
So there went my morning, and I didn't get to see Grant until almost noon. Grant now pretty much opens his eyes if you keep talking or moving him; it's not like April 1, when nothing had any effect. He seemed a bit more tired today than yesterday. The speech therapist came in and got him to open his mouth some. I told him he's going to have to learn that if he wants to eat a Big Mac again.
Love,
Grant Friday June 15
Dear Friends,
Nothing much to report. Apparently Grant had a small fever (100.6) last night, but his temp was down to below normal today and nobody is concerned.
The speech therapists have this method of testing the yes-no responses: they ask a lot of ridiculous yes-no questions, like "Is your name Grant?" "Is your name Bob?" "Do mice fly?" "Is bread food?" You can just see Grant thinking, "Gee, this is stupid." He curls his lip and won't play.
Maybe you all could think of yes-no questions that would be more interesting for Grant: "Was COBOL the name of a programming language?" "Was LINUX written by Steve Bourne?" etc. Send to me!
Love,
Grant Saturday June 16 -- Grant's Birthday
Dear Friends,
Grant turned 53 today. He was awake quite a lot and had many visitors.
I brought in some fresh-ground coffee, some soap, sage, nutmeg, and powdered onion for Grant to smell. He REALLY liked the coffee -- Major Dickason's from Peets, our favorite. He turned his head to get a good sniff.
We are practicing mouth movements. I think he made a "P" sound on request about 10 times.
The pictures from Adobe were a big hit. Grant reacted obviously -- he sort of snorted -- when he saw the shots of Greg Gilley in the pointy hat.
Grant also looked intently at the photos of co-workers. Thanks so much, you guys! The speech therapists were delighted to see the pictures, too, because they can use them for yes/no questions ("Is this Scott?" "Is this Dick?" etc.)
My brother Dan and his wife Barbie brought in a whole bunch of birthday balloons, and everybody wished Grant happy birthday.
Grant seemed happier today. He was a tired bear by evening.
Love,
Grant Sunday June 17
Dear Friends,
Grant was as awake today as I've seen him (since this all started, of course!). They moved the meds "tree" to the other side of the bed, and did he ever notice! He REALLY noticed the monitor over the bed today also -- stared wide-eyed for a long time at it.
I have a technical question for you technical people. Grant has an IBM Thinkpad 600, and I notice it has a slot for a CD. I believe he's running some kind of Windows OS. There are many beautiful digital photos of Aptos on the machine I am now using (also a Windows machine, excellently featured, purchased about 3 weeks before Grant got sick). I can display these photos using Explorer. I believe there is also hardware on this system to make CDs. My hardware knowledge pretty much stops circa 1985, but I figure there must be a way to make a CD of these photos and display them on the portable. I'd like to bring the portable to the hospital and show Grant the pictures. I'm pretty sure I can run the show once the CD is made.
Unfortunately, I have not been able to figure out how to turn the Thinkpad ON, let alone how to make a CD of the photos. I feel like an idiot (or, as my students would write, "I feel so retarted"). Could anyone help with this? It would probably require a house call.
Thanks for any help!
Love,
Grant Monday June 18
Dear Friends,
Grant was much the same today. He had a low-grade fever (100.8) when I left tonight; the nurse said she thought it was because his room was hot. He looked flushed and did not seem happy.
My neighbor Norman helped me make the CD of the Aptos pictures. That was straightforward and the CD is ready to go. The ThinkPad's battery was dead, and that's why it didn't start. There was an extra battery in Grant's briefcase. Grant's adaptor is probably in the Aptos house. So if anyone has an adaptor I can use until I can get the one in Aptos, I'd appreciate it! (Caleb?)
Here's the latest problem: we discovered Grant is running Windows 2000 on the ThinkPad, and it wants his password. I don't know Grant's password! Does anybody know a way to get in? Is there something you can do while it's booting, for example?
With all the brain power here, if there's a way, someone on this list should know it!
Love,
From: Caleb Belohlavek [mailto:caleb@Adobe.COM]
Sent: Tuesday, June 19, 2001 12:30 AM
To: sandy_lafave@westvalley.edu Cc: Susan Doering
Subject: Re: Grant Sunday June 17
It was really nice to see Grant today and also nice to finally meet you. I just wanted you to know that I also have a ThinkPad 600X, so I am trying to contact Bruce Hunt with the hope that he can bring you an extra power cord that I have. If not, I'll try and bring it by the hospital this week. Please verify on the bottom of the laptop that it is 16V (16 volt) before you plug it in. I don't think that Grant's computer would be any different than mine, but you can't be too safe.
Also, let us know how the CD-ROM issue goes. If someone can't figure out Grant's Dell, then maybe we can find a way to get ahold of your files and burn a CD at Adobe? Let me know.
Other than that, I just want to thank you for spending the time with us while we visited Grant. I'm not sure that Susan and I were any help, but I'm hoping that soon Grant will be asking you why all of those people kept coming into his room! It's great to see that he is making progress and I look forward to hearing how he reacts to the ice that the therapist will be bringing in.
Thinking of you both - every day, Cale
BGrant Tuesday June 19
Dear Friends,
Grant was very alert late this afternoon. I felt like we were communicating for the first time in several days.
He had his first exam by the neuropsychologist. I'm not sure what that guy does exactly.
He also had his first head-and-neck massage. Dr. Cathy recommended this, as well as acupuncture, but they don't allow acupuncture in the ICU. The massage seemed to help Grant's head, neck, and mouth movement a lot.
The speech therapist put up two signs (“YES” and “NO”) at the bottom of the bed, one on each side. If you want him to answer yes/no questions, tell him to look at the “YES” or the “NO” and watch where his eyes go. Blinking seems to be too unreliable right now.
We viewed digital pictures from Aptos! Still can't get in to the ThinkPad, but Bruce Hall had his portable and we put it on the one-armed table. It worked really well, and Grant seemed pretty interested. If you visit, you all can bring your portables and show Grant pictures off the CD if you like. The CD is in the top drawer of the entertainment cabinet (the one near the window); it's labeled “Punkalunka Images”.
Love,
Grant Wednesday June 20
Dear Friends,
Nothing much new today. It was HOT outside. They decided Grant couldn't be on his back, because of the D-cube, so they had him in what looked like pretty contorted and uncomfortable positions, and he did not seem happy about that.
Does anyone perhaps have an extra portable I could borrow? It doesn't look like Grant's going to give us his password any time soon. Alphabet board results are inconclusive.
Love,
Grant Thursday June 21
Dear Friends,
Grant was in good hands today -- he had one of his favorite nurses (Jeri). He was alert most of the day and more cheerful. He is out of isolation for the Clostridium infection, so no more canary gowns or gloves! I like that.
Things are moving very slowly on the neuro front, but they're moving.
People are beginning to talk seriously about moving him into a sub-acute. I got a message to call
Love,
Grant Friday June 22
Dear Friends,
Grant will leave
So the doctors blame the insurance companies, and the insurance
companies (
The doctors and nurses want to provide good care, and they seem powerless.
Hey, I'm not a communist (anymore) -- capitalism has treated me well enough -- but it seems to me there's something a little off here.
Mapquest says the driving time from Adobe to the sub-acute
in
Thanks for all your help and support, especially getting the portable going!
Love,
Grant Saturday June 23
Dear Friends,
Today Grant was nice and alert. He stares wide-eyed at the equipment and looks closely at all procedures. I drove his car today and parked it outside his window where he could see it. (I can never get that parking place during the week!) He stared at the car too.
I went down to
Also today, one of the nurses at
I still don't know who to believe, of course, but I feel somewhat
better about the
Love,
Grant Sunday June 24
Dear Friends,
Grant had a sleepy morning; naturally this was when his visitors came. But this afternoon he was friskier. He discovered he could move his eyebrows -- like Groucho Marx but more slowly. He did it to my delight many times on request.
It's SO hard for me to leave when his eyes are open. This evening I stood outside the window and waved and he was definitely looking out at me.
Love,
Grant Monday June 25
Dear Friends,
Grant seemed in low spirits today, though he was awake most of the day.
Oh, I forgot to tell you, the other day Dr. Cathy said he's officially NOT COMATOSE any more -- though he's not quite fully awake most of the time either.
He's had low-grade fevers for the last couple of days, so plans for transfer to sub-acute are
being postponed until Dr. Armstrong gets back from
Love,
Grant Tuesday June 26
Dear Friends,
Grant had a bad day today. He started to vomit a lot in the early afternoon, and spiked a temp of 103.4. They emptied his stomach through his nose. They don't know what caused the vomiting.
His labs showed abnormal thyroid activity, and this accounts for the very high heart rates we've been seeing the last few days. They put him on a beta-blocker to lower the heart rate, and now they're calling in an endrocrine specialist.
The labs also showed infection in his urine. So he's back on vancomycin.
He seems SICK.
As if that all wasn't enough, get this. The
Since he's sick, he's not going anywhere quite yet.
I feel scared and frustrated and angry and tired ...
Love,
Grant Wednesday June 26
Dear Friends,
Well, Grant was very sleepy today, but his fever is gone, and his heart rate is down, and to me he looked a whole lot better than yesterday. I assume he is weak now partly because he hasn't gotten any nutrition since the vomiting yesterday afternoon.
I am hopeful this was just a minor episode and that he will be more lively and well tomorrow.
No new developments on the sub-acute front, except that I was assured by both the hospital social worker and Valerie at Adobe that he is NOT going to go to Marin, because it's farther than 60 miles, and there's a law against moving someone more than 60 miles from the nearest relative without consent.
So where WILL he go? Your guess is as good as mine. Stay tuned ...
Love,
Grant Thursday June 27
Dear Friends,
No fever today! He has yet another infection, but not a big deal, apparently -- myecellin resistant epidermal staph growing in his blood (MRSE, as opposed to the much-worse MRSA, which he had in April-May). This in addition to the urinary tract stuff. Because of the MRSE, hand-washing before and after visiting is especially important.
Given that he hasn't had any food since Tuesday, he was pretty alert today -- his eyes were open just about all the time I was there. I showed the digital photos on the portable (thanks to Gregg Wilensky, Martin, Dick Sweet, and probably others I don't know about). The pictures are great, and Grant seemed really interested and at times almost happy.
There's talk of moving him to the medical ward, out of the ICU, since in a few days, he won't be that sick (we hope).
The latest buzz on sub-acutes: they can place him in the Winchester
Convalescent hospital (on
Love,
Grant Friday June 29
Dear Friends,
Grant seemed pretty tired today. The blood tests showed he's anemic again, so he's receiving 2 units of blood tonight.
I got a CD about birds from the Audubon society. It's really good -- lots of pictures and quicktime movies and sounds. Grant seemed very interested.
Visit next week if you can! Adobe is off, so lots of those folks will be away.
Love,
Grant Saturday June 30
Some low-grade fever today, and fatigue -- a sleepy guy most of the day.
Grant Sunday July 1
Dear Friends,
Grant spiked a fever last night and another one this afternoon. The doctors don't know exactly which of his infections (pseudomonas or MRSE or ??) is causing the fever. They are treating with multiple antibiotics, plus the thyroid medicine plus the beta blocker. His heart rate is still rather high (120-130).
Faina applied lots of ice and got the fever down to 100.2 when I left.
He seems sick and tired. He keeps trying to open his eyes but can't stay awake for more than a few seconds.
One of the doctors -- somebody's backup, seldom seen -- said “It's a rough course.”
Love,
Grant Monday July 2
Dear Friends,
Our guy is still sick and sleepy. No big fevers that I know of, but kind of up (102) and down (normal) throughout the day. He seems uncomfortable often -- grimacing, coughing, labored breathing.
I hate to see him like this. I wish he could tell us where it hurts, if it hurts.
Love,
From: Jim King [mailto:jking@adobe.com]
Sent: Tuesday, July 03, 2001 8:36 PM
To:
Cc: Marianne Deaton
Subject: Visited Grant
He appeared to be very tired. When I talked to him his breathing changed and you could tell that he was reacting to me being there.
Just thought you would like to know that some one is visiting him.
Jim King
RE: Visited Grant
Hi Jim!
The nurses told me you had visited. Thanks!
Grant's fighting another infection, and has been pretty much out of it since Saturday (when his temp was 103).
He is getting multiple powerful antibiotics and you're right, he's very tired.
Thanks for coming by, though. He seems to be improving some today (Tuesday).
Grant Tuesday July 3
Dear Friends,
Grant seemed somewhat more peaceful today, but pretty much out of it. His temp and other vital signs are okay, and labs show less infection, so he seems to be going in the right direction. He's receiving some powerful antibiotics, so he's flushed and can't stay awake for more than a few seconds. Still, he looked less sick.
Love,
Grant Wednesday July 4
Dear Friends,
Grant is still fighting infections. He has some kind of local hospital-acquired ("nosocomial") pneumonia now, plus urinary tract infection. The doctor said everything is being treated and seems under control; they are watching him carefully. The drugs zapped the bugs in the culture specimen, so the doctors expect they'll work in Grant. He had no fever today, but did have diarrhea, which might indicate anything or nothing. The diarrhea is not good because he needs all his nutrition to combat the infections. He is sleeping most of the time and does not seem in any serious discomfort. His breathing is regular but his chest is obviously congested.
This is a tough time. I'm happy Grant's mom is coming tomorrow.
Love,
Grant Thursday July 5
Dear Friends,
I am hoping this latest crisis is waning.
Grant was alert this evening for almost an hour. We looked at pictures -- including all the Adobe pictures -- again. This was the first time in about a week he's been able to stay continuously awake.
Love,
Grant Friday July 6
Dear Friends,
Grant seems a little better today than yesterday, which means more progress in the right direction. He stared with great interest at his mom!
They are working aggressively on his D-cubes, and have decided (after a month of this) that gee, he probably experiences PAIN when they abrade big open sores to remove huge patches of dead skin -- it appalls me that no one was doing anything about this before -- so he's now getting a little morphine(!) when they do this.
What a trooper he's been.
Love,
Grant Saturday July 7
Dear Friends,
Not a bad day. Grant wasn't very awake, but he was a bit more than yesterday (I thought) and had no fever. I spoke with a couple of doctors, and everyone is saying he's better than earlier in the week.
Gee, if this keeps up, we'll start the sub-acute dance again...
Love,
Grant Sunday July 8
Dear Friends,
Grant seemed much better today -- very alert, looking around, etc. No fevers at all!
The hospital closed the ICU -- there were only 2 patients in the CCU and 3 in the ICU -- and moved everybody into the CCU. So Grant's in the CCU again, and has lost his nice quiet room with the window. :-(
Maybe he'll want to leave intensive care altogether now! I hope so.
Love,
Grant Monday July 9
Dear Friends,
Grant spent only one night in the CCU and is now back in the nice room in the ICU, thanks to his wonderful nurses who moved him back as soon as they possibly could.
Moving Grant is much harder than moving other patients, since he's been there so much longer and has lots of stuff. I'm touched that they took the trouble to move him back today anyway.
Now they say the ICU may close AGAIN ... The closings of the ICU are always temporary, to "balance" staffing (i.e., so the hospital doesn't have to pay extra people). I'll keep you posted. It's entirely possible he may be back in the horrible CCU tomorrow. When I left this evening, things didn't look very, you know, balanced somehow.
Grant was pretty much the same today. The bronchoscopy showed no problem with his lungs, but possible problems with the pleura, which is the sack that holds the lungs. He had to get a special CT scan of his lungs. Results tomorrow. Also he had a rash today, probably an allergic reaction to some antibiotic. I don't know if either of these new things are dangerous. It all seems dangerous.
Let's hear it for the nurses, especially Mimi and Robin. If you visit, say thanks!
Love,
Grant Tuesday July 10
Dear Friends,
I wish I had more to tell you. There aren't many changes day to day. Grant had a rash, but it went away. He's on different antibiotics. He has some fluid in the pleura but for the time being it doesn't seem to concern the docs. Dr. Cathy comes back from vacation tomorrow.
Grant has been at about the same level of alertness, when he is not ill with infection, for almost six weeks. He hasn't smiled for weeks. It is hard to tell what he is feeling or thinking, but he doesn't appear happy.
I wish I could say he's moving his arms or legs voluntarily, but it's not happening (yet). Armstrong says the longer it doesn't happen, the worse the prognosis for recovery of motor function in his arms and legs. I hope Armstrong is wrong.
Meanwhile, he remains in the ICU (101 days so far) with pseudomonas pneumonia and MRSE and tubes ... well, everywhere you could put a tube, he's got one. At best, he looks around, moving his eyes and occasionally his head. He's sleeping a lot, and still too sick to move.
The nurses have named his room the Agapanthus Suite for the
flowers outside the window. They say it's
the best room and they all agree it's where he belongs, at least until he's
carried to the next stop on the great train of Managed Care (gotta MANAGE that
care, you don't want anybody to get TOO
MUCH -- I am reminded of the voc ed program in "Hospitality
Management" at
Love,
Hi Bob
I'm so glad you wrote.
Your letters make me feel like somebody understands and cares.
You know I haven't been able to talk to Grant since the end of March -- he'd be the ONLY person I'd really talk to, and he's currently unavailable. I could deal with all this a little better if I had a strong sense that he's still “in there” but most of the time I don't. At best he stares or blinks on command... But he doesn't smile (and he did that in early June). Maybe that's because he can't smile now, or doesn't feel like it, or maybe he's just too weak, but I'm uneasy that he DID do it and now he doesn't. There was something in his eyes before that's not there now. He seems not have made any neurological improvement in many weeks, and in fact is worse medically. I worry that even if he gets medically stable again, he may “plateau” here neurologically and be like a baby forever -- that he's really already gone. His stare is unsettling because it's so childlike and simple. Where is the brilliant guy I knew? Where?
Sometimes I even feel just tired of it all, and I just want to run away. Sometimes I find myself at his bedside thinking, "This is really boring. When can I leave?" I feel terrible about feeling that way, of course, and then I can't do enough for him, but there's just not much you CAN do for someone whose only responses are so opaque. I feel comforted when you say he knows I'm there and that I'm doing some good for him -- and I was certain of that, too, until a few weeks ago. Now it seems like one of those Kierkegaardian matters of absurd faith.
I was sorry to hear that you had a heart attack! I didn't know. I'm glad you're feeling well now.
Did you ever have an extended period of non-communication like this with your sister or with Cheryl? When you didn't have a clue and were just hanging on because the thought of letting go was even worse?
Thanks for letting me say all this scary stuff to someone. Dr. Cathy told me to get a massage. I think I would fall apart crying. Virtual hugs are good. Thanks.
Grant Wednesday July 11
Dear Friends,
Although Grant seems to be holding his own, he is now on isolation again -- the whole nine yards, gown, gloves, AND MASK ("droplet precautions"). He has airborne MRSA (the bad kind of resistant staph that he had before), plus the other infections.
But he still seems much better than last week.
Love,
Grant Thursday July 12
Dear Friends,
Grant is much the same today. The pulmonary doctor said his chest X-ray looked like the pneumonia was getting better, but that they'd be carefully monitoring his white cell count to make sure the infection levels go down too.
Grant looks good and has no fever to speak of, and all the vitals are fine.
The droplet precautions are a drag. Everybody has to wear a mask. Grant was pretty awake this morning and when he saw me wearing the mask, he stared at me wide-eyed for a long time. Like he was thinking “What's THIS?”
Love,
Grant Saturday July 14
Dear Friends,
There was no message yesterday -- nothing new to report.
The good news today is that Grant apparently does NOT have any pus in his pleura, so he won't need an operation to scrape it off.
Dr. Cathy saw him today for the first time in about 3 weeks. She said she thinks he looks more alert and awake than the last time she saw him.
Grant's mom is going back to
Love,
Grant Sunday July 15
Dear Friends,
Thanks so much for your notes and cards and visits. So many people have been so kind. I have read that people who are sick for a long time lose 90% of their friends in the first few months, but that sure hasn't been the case with you wonderful people!
Grant seemed more "with it" today than he's been in a long time.
I talked with Dr. Cathy. Grant has hypothyroidism now, which seems to be under control. It's apparently something he might have gotten anyway, but it's been interfering with his progress. Dr. Cathy says it will probably be a permanent condition, but not a big problem.
Grant's pneumonia continues, but appears not to be getting worse. They are halting the vancomycin for a couple of days because he's been getting so much of it they want to reduce chances of side effects from it. Apparently it is a very restricted drug: only two doctors at the hospital are even authorized to prescribe it (Dr. Armstrong and his partner Dr. Majumder).
Dr. Cathy says it will be at least 3-4 weeks more in the hospital while Grant recovers from the pneumonia and the bedsore, which continues to require a lot of attention. The first thing in his chart is a glorious color photo of it.
Love,
Grant Monday July 16
Dear Friends,
I saw mostly Sleepy Grant -- he got morphine for his butt-scrape procedure.
No temps, at least.
Love,
Grant Tuesday July 17
Dear Friends,
Grant seems the same physically -- maybe a little happier.
I got a call today from
Dr. Cathy is off to
Love,
Grant Wednesday July 18
Dear Friends,
Grant was pretty good again today. His feeding tube stopped working last night, so everyone was all aflutter over that. The nurses called in the surgeon who put inserted the tube; they thought maybe Grant would have to go to the operating room for emergency replacement, but it turned out the tube was just clogged.
The speech therapist got good consistent yes/no response from Grant for the first time today. She stopped asking him to blink and used eye movements instead -- looking at the words "yes" and "no" well-separated on a piece of paper. If you visit, you could try also. It's pretty interesting. If he seems awake, please be sure to ask if he's in pain.
I asked him if he knew what month it was -- and he seemed surprisingly clear on that: "Is it May?" (no) "Is it June?" (no) "Is it July?" (yes).
"Do you feel frustrated?" (YES).
"Can I tell your Mom you send your love?" (YES).
Love,
Grant Thursday July 19
Dear Friends,
Well, they actually offered Grant a bed at
Well, of course, the whole thing is.
The docs are now all hot to evaluate his mental status, because they feel he's not improving as quickly as they would like (well, I think I'd be a little slow if I hadn't eaten in 24 hours and I had pneumonia and I were on beta blockers AND morphine AND vancomycin AND thyroid meds and God knows what else -- DUH!). Dr. Gould the neurologist is back on the case, and he's ordered Ritalin to give Grant a little extra pep. Grant had morphine again today and was kind of spaced.
I am wondering if I should continue the full-throttle "stimulation" program I've been doing (minimum 6 hours/day of talking, smelling, reading, playing music, etc., like when he was comatose). Do you think that might be making him tired? Hurting instead of helping? I'm thinking of letting him sleep more, especially because of all the infections.
He's going to have another MRI in a few days. I am full of fear over that. The last MRI showed unexpected LOSS of motor neurons -- not just demyelination. I.e., his case isn't going along as expected. (He's unique, but we knew that.) I hope this next MRI is better and not worse. They're doing it sooner than I expected because the clinical picture -- his apparent lack of improvement and especially his apparent inability to move his mouth and tongue -- is so unclear. The docs realize these manifestations could be due to all kinds of things: the infections, hypothroidism, face and jaw muscle atrophy, depression, drug interactions, etc., and they want to rule out any possible new neurological factors. All along they've been saying his cognitive faculties have been spared -- that the disease affected only the brain stem and long-term he may not be able to move much, but he will still be himself. God, I sure hope so. This MRI will tell.
Love,
From: Eric Mueller [mailto:eric@muellerzone.com]
Sent: Friday, July 20, 2001 4:37 AM
To: sandy_lafave@westvalley.edu
Subject: FW: Grant visit
Hi Sandy, As mentioned below, Melody and I were going to try to visit Grant this Sunday. If for any reason you think this a bad time please let us know. -Eric
RE: Grant visit
Hi Eric and Melody,
Do come anytime! This weekend is fine. As Martin said, weekends are especially GOOD times to visit, because the regular Adobe cadre doesn't schedule visits then, and I am often the only one here.
I'll tell the nurses you're coming so you can get in if I'm not there. They don't often ask any questions, but sometimes they get all security-conscious. I imagine that if they ask and you say you are "Bruce" and friend, they'd let you in, since there are several Adobe people named Bruce and they don't know one Bruce from another.
I can meet you there if you like also. It would be nice to see you.
Love,
From: Linda Weinert [mailto:weinert@la94022.com]
Sent: Thursday, July 19, 2001 8:33 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant Thursday July 19
Hi Sandy,
We haven't fallen off the edge of the earth. We read every day's report always thinking of you and hoping for the best.
Since we got back from
I'm very tired of being sick and tired and somewhat
depressed about
Our floor saga continues. Tomorrow they come to replace the boiler for the radiant heat. (We share that boiler for hot water. For the last month or so we've been heating hot water electrically with our backup system.) We'll find out then whether they believe they have found ALL the leaks. This is contributing to my depression because I'm tired of having the house be a mess and having contractors show up at their whim, but not seeming to get anywhere.
I'm also working on figuring out the basis for the house we sold last April for our '00 taxes. We had to get an extension for other reasons, but anything to do with taxes always puts me in a bad mood, too.
So, if I weren't so depressed, I could probably turn this into a top 10 reasons I'm so depressed, but I'll spare you.
Hope all goes well with the MRI.
Love,
Linda
RE: Grant Thursday July 19
Hi Linda,
Gee, your situation with
Don't worry about not visiting. Please, if you're sick, DON'T.
I think visiting can be very hard on people. Several grown-up friends of Grant got tears in their eyes when they saw him -- I mean big guys, engineers. One actually cried. Lately, it's just physically hard -- when you're wearing a mask and reading aloud, you get pretty out of breath and your glasses fog up. Not that you can't handle it -- it's just that I want you to know that I know how hard it can be, and I appreciate it.
I'm reading this book called "Full Catastrophe Living" (great title). It's about the Stress Reduction Clinic at Harvard or MIT or one of those places. They use meditation practices to help people cope with major life stresses. As self-help books go, it's not bad. Reading it often helps me calm down, anyway; but I'm still crying a whole lot. It just seems things are spinning out of control now. The healing idea, according to this book, is to give up the illusion that things ever are or were "under control" in the first place. True, of course, but hard to stay mindful of.
To: Jim Mull
Hi Jim!
Thanks for the neat stuff!
I got your package yesterday -- Thanks so much. I LOVE the tapes. It was so thoughtful of you to send the Baltimore Catechism; it will give me hours of fun. Thank you!
Grant has a big MRI tomorrow. He's not progressing as fast as the doctors thought he would -- his mental status has hardly changed since the beginning of June. He is like a little baby. He stares into space. He still cannot voluntarily move his arms or legs, and the doctors say the longer he doesn't move, the greater the chances of permanent quadriplegia.
I am so sorry to hear about your health status. I am glad the prognosis is good, but it must still be terribly worrisome to face a big surgery and hospital stay. Hospitals are dangerous places; don't stay any longer than you have to! Grant's gotten all kinds of "nosocomial" infections; "nosocomial” is their special word for "hospital-acquired."
Please keep me updated about your progress, okay?
I'm reading a book called "Full Catastrophe
Living" (great title, no?). It's
about the Stress Reduction Clinic at
Please say you're KIDDING about Leroy and Joe Samuelson!!! I thought I heard Samuelson had committed suicide.
All my best.
Grant Sunday July 22
Dear Friends,
Grant seems SLOWLY getting over his pneumonia. He still seems very tired and unhappy.
Today Dr. Armstrong got concerned that Grant's tummy was swollen, and ordered his feeding stopped, and a special X-ray of his abdomen. (It seems Grant gets X-rayed every other day for one thing or another; he's going to glow in the dark when he comes home!) They had to suction out of his nose again in order to remove all the food out of his stomach for the procedure. Poor baby. I didn't hear any results yet.
Tomorrow is his MRI. It would be nice to get some positive news!
Love,
Grant Monday July 23
Dear Friends,
Grant didn't have the MRI today. There was a mix-up with the appointment time. The lab called the ICU in a huff at 8:30 AM this morning and said "Why isn't he here for his 8:00 appointment?" -- when of course we'd been told the appointment was at 3:00. So he's having it tomorrow afternoon (I think -- they even called him AT HOME today to remind him).
Grant's heart rate is very high again (140 range), but he has no temps. He seems sweaty and sleepy. His eyes are still red. He's less awake than he's been. I'm not sure the Ritalin agrees with him. He's got another rash.
Another email address for me is
sandy_lafave@punkalunka.org
Grant set this one up, so it's never failed.
Love,
Grant Tuesday July 24
Dear Friends,
Dr. Cathy is off to
The MRI happened, but I haven't heard any results.
I am sad and scared.
Love,
Grant Wednesday July 25
Dear Friends,
I got more detailed info on the kidney problem. Grant's creatinine levels are slightly elevated. This means his kidneys aren't flushing as effectively as they did a couple of weeks ago. (This is not surprising, given all the drugs his kidneys have had to process for the past four months.) Kidney problems happen when the immune system is stressed. So the bad news is the kidneys aren't working quite as well as they did until quite recently. The good news is that they're still working well enough not to be an immediate big worry -- he doesn't need dialysis or a kidney transplant or anything like that, and if they continue to work at the current levels, he won't. The docs are going to be watching him carefully for changes, but I have a better feeling about it today.
Also, the white cell counts are consistently lower, which means he's getting over whatever infection was raising them. The bad news is that he's still getting low-grade fevers, and has a very high heart rate (150), and the docs don't know why either of these things are happening. Majumder said he thinks Grant might be "brewing" another infection.
I talked to the docs about Grant getting more vertical, as Melody Mueller suggested. Botros wrote an order for Physical Therapy to sit him up for a short time every day, so I guess they'll start tomorrow.
Grant seemed slightly more "with it" today than in the past few days but he's still pretty sleepy.
Love,
Grant Thursday July 26
Dear Friends,
Well, I think Grant had a pretty busy day today. He had several visitors, and a massage, and the physical therapy gals came in and sat him up. In the process they tore out his feeding tube, though, so the surgeon has to some in tomorrow and assess the damage. As Rosanne Rosannadanna would say, "It's always something."
The preliminary report on the MRI shows no change, according to Dr. Majumder. I guess that's good.
The low-grade fevers continue, on and off -- off enough that they're not going to re-start the vancomycin yet.
He seemed intermittently pretty alert.
Love,
From: Bruce Hunt [mailto:bhunt@adobe.com]
Sent: Friday, July 27, 2001 9:41 AM
To: sandy_lafave@westvalley.edu Cc: bhunt@adobe.com
Subject: Hi, Saw Grant Last Night
Hi Sandy, I saw grant last night. He opened his eyes and stared at me intently. I talked at him for about 5 minutes and he sometimes seemed to understand and sometimes not. I didn't do the yes or no thing.
Also, he moved his body. He drew himself up, grimaced and then relaxed. He was lying on his back with a pillow between his legs. His legs came up and his torso bent like he was trying to sit up. You know how he gets that kind of troubled look on his face, sort of like, “I don't like this one bit!”. Well, he was doing that when he moved his body. I don't know if the movement was voluntary but I've never seen him do that while visiting. So, I congratulated him on the movement!
On another front, Elton Hayes at Adobe (in the IS department) has a program that cracks Windows 2000 and Windows NT passwords. Would you like to try that on Grant's IBM portable machine so that you could use it? Here is a “white hat” use of password cracking technology.
cheers /bruce -- Bruce
RE: Hi, Saw Grant Last Night
Hi Bruce,
Sure, let's try to crack Grant's password. Some programs give me annoying error messages when I run them, and I'm sure they don't for him.
I've seen that body movement you describe. Sometimes it looks like it might be voluntary to me, too. I have a feeling it's a cough deep down in his lungs, from the pneumonia, but I'd like to think it's more. I've seen what appear to be voluntary leg movements too, though not in a week or so.
I can bring Grant's portable down to Adobe sometime next week if you like. What day would be good?
Grant Friday July 27
Dear Friends,
Gee, can you believe it's going to be AUGUST soon? This all started at the end of MARCH!
As you probably recall, yesterday the Physical Therapy gals accidentally pulled out Grant's feeing tube around 4 PM. The surgeon finally showed up tonight around 6:30 and couldn't get the feeding tube back in, so they had to take Grant to the OR and do another whole procedure. The surgeon said he could have replaced it yesterday without surgery if someone had TOLD him it had fallen out, but (according to him) nobody told him. He said the procedure is relatively trivial and safe, but still, I'm a little peeved: after all, it's another big incision, and possible source of infection. AND Grant didn't get anything to eat in over 24 hours.
Otherwise, Grant seemed not bad today: no temps, chest a little clearer. There are some bugs growing in his lungs, but Dr. Majumder says it's a "colonization" rather than an infection -- a distinction I do not really understand ("colonization" sounds just as bad as "infection" to me) -- anyway, Majumder didn't restart the vancomycin.
Love,
Grant Sunday July 29
Dear Friends,
Grant looked at bird pictures on the computer pretty attentively for at least a half hour. He had his eyes open for several hours total today, though he didn't seem to be focussing well. His eyes are still both pretty bloodshot -- they were giving him eyedrops for what looked like conjunctivitis but they stopped because the drops could have hurt his kidneys. MRSE, which he had (has?), can affect the eyes...
The surgery to insert the new feeding tube went fine, it seems, though the on-call doc said it never should have been necessary.
His vitals were very good today. His heart rate is down in the 80-90 range. Lung secretions are down, no temperature, a bit more awake. We're still in isolation -- it will be 3 weeks this Wednesday, so I'm hoping that will end soon.
Love,
Grant Monday July 30
Dear Friends,
Grant was pretty awake again today -- more than I've seen in a long time. Someone had put PBS on the TV, and for a while Grant was paying close attention to Thomas the Tank Engine and his friends. I'd never seen that program; it's pretty surreal, but nothing really compares to TeleTubbies on that score, IMHO.
Dr. Armstrong is going to call in an eye specialist to have a look at Grant's bloodshot eyes. Armstrong doesn't seem concerned because there's no pus. I'm glad he's thorough. Armstrong also said Grant's lungs are much better. Oh, and Armstrong's going to ask the surgeons if there's anything surgical they can do for the decubitus (like a skin graft). Last I heard, the thing was getting better, but it's sure healing slowly.
All good vitals again today. It was one of those days when I felt really bad about leaving because Grant was still awake every time.
Love,
Grant Tuesday July 31
Dear Friends,
Four months now! We went to the emergency room on Saturday March 31.
I think Grant's got to hold the record for most consecutive days in this ICU. I've seen 'em come and go, nobody for this long.
Grant was a bit less awake today, no temps, everything else fine. The neurologist asked me if I thought Grant needed more Ritalin (speed). I don't know! It's a little disquieting that he apparently doesn't either.
Jeri took care of him today. She is so great. When she's taking care of him, I feel at ease (as much as possible under the circumstances).
Oh, I found out the program Grant was so interested in yesterday is "Jay Jay the Jet Plane" -- not Thomas the Tank Engine. Jay Jay and his friends are all airplanes. They are huge heads with wings like cherubs. I have always found cherubs a little unsettling and uncanny. Maybe Grant feels like one, now that he's so disconnected from his body.
Love,
Grant Wednesday August 1
Dear Friends,
Well, Grant's going to get even more surgery. Friday he's having a Hickman catheter inserted (another central line-type thing, but less likely to get infected). At some indefinite time after that, he's going to have a “major surgery” (2-3 hours) on the decubitus -- a graft involving the gluteus muscle. The problem is that the decubitus is very deep, so that a skin graft alone would die without a blood supply, and the decubitus has eaten that away. The gluteus, however, does nothing much, and can be moved to supply the blood to the skin graft. Aren't you glad I told you that?
Had a long talk (for him) with Dr. Armstrong today. Not much new except he's more consistently saying “don't know” rather than “quadriplegia,” so I guess that's not bad. The down side is he's talking in terms of YEARS for recovery of function. Also, interesting news about the latest MRI: Grant's still got "active disease process" from the ADEM. The swelling they saw in May is still there. That explains why he's progressing so slowly.
Actually, Grant was moderately peppy today. He got to go on a ride down the long corridor to the CT lab for a test. I think he likes the change of scene.
Love,
Grant Thursday August 2
Dear Friends,
No changes today. Surgery for the Hickman catheter tomorrow.
The neuropsychologist was impressed by Grant's alertness today, so gave him a good report card. Grant did the “yes” and “no” stuff very consistently for him, for at least 5 or 6 questions.
Love,
Grant Friday August 3
Dear Friends,
Grant had a busy day. He had a little surgery in the early morning, to put in a new central line (the Hickman catheter) -- this in preparation for the surgery on his decubitus. The surgery went fine. I gather the line isn't placed quite right but they've decided to use it anyway.
It turns out that he also has to have a COLOSTOMY in preparation for the decubitus surgery! The surgeon recommended the colostomy because of the inconvenient location of the wound -- the particular liability for infection there. The colostomy will not necessarily to be a permanent ... fixture.
I don't know when that's all going to happen, but the timetable just for getting the wound healed, AFTER the surgery, is 4-6 weeks.
On top of that, the nurses are having just a hell of a time connecting something called a Lopez valve to the new feeding tube. It's clearly a hardware problem -- the pieces just don't fit, so the thing is always leaking a little and wetting the bed and the sheets and the gown, and his skin, etc. I asked one of the doctors about it and she said, in the nicest possible way, that it was "a nursing issue" and she didn't know anything about it.
ALL these are problems that never should have occurred! He had a fancy bed that was supposed to prevent bedsores and his other feeding tube was working fine until the physical therapy accident.
God, I hope we can really laugh about all this someday. I'd be pretty furious if it were MY body ...
Love,
Grant Saturday August 4
Dear Friends,
I think the neurologist increased Grant's Ritalin: Grant's heart rate is up and he's sweating and more twitchy than usual. But he doesn't seem significantly more awake -- if by “awake” we mean eyes open and looking around.
It's funny: much of the time when his eyes are closed, he'll open them immediately if you ask him to. He's often less asleep than he seems.
So maybe the Ritalin has him all wired on the inside -- hard to say.
Love,
Grant Sunday August 5
Dear Friends,
Grant was fine today. He looked around a lot, and was awake on and off all day. We are using the YES/NO gaze system, and Grant answers questions consistently. The vexing problem is that, as Martin Newell said, you only get three yes/no questions for your quarter. After about three questions, Grant closes his eyes and goes to sleep for a minute or so, then wakes up, and you can start again. It's really limiting, because he doesn't have the attention span for anything that requires sustained attention. For the time being this rules out alphabet board, Morse code, etc., since they require putting together lots of small parts to produce a word or sentence that must remain fixed in his mind throughout.
So far we've determined that he's not in pain, is sometimes annoyed
by the TV, wants to go to
Anything you'd like me to ask him? I'm having a hard time thinking of interesting yes/no questions anymore.
Love,
Grant Monday August 6
Dear Friends,
Well, there was a bit of good news on the decubitus today. The PT folks came in to do their super-scrub job on it, and they decided it was so much better they should leave it alone. It was TOO HEALED! (Reminds me when Grant got the ventilator to say “TOO MUCH INSPIRATION”!)
But he still has to have the big graft butt-muscle-moving surgery.
Otherwise, he was sleepier, grumpier today.
Love,
Grant Tuesday August 7
Dear Friends,
Grant seemed to be having lots of dark feelings today. He seemed weepy, angry, sullen, edgy. (Who can blame him?) The Ritalin is making him twitchy. When he's moved, his legs spazz like crazy.
I saw the decubitus today for the first time in eight weeks or so. Remember the Merchant of Venice when Shylock wants his “pound of flesh”? Grant's backside looks like somebody literally carved out a pound of flesh. I won't go into the details. I'm glad he can't see or (much) feel it.
The colostomy is scheduled for Thursday Aug 9 and they hope to do the skin grafting early next week, maybe Monday. I hope he gets through all this surgery safely and without infections!
I start classes again the 20th. I hope he starts feeling better soon so we both won't feel so sad when I have to leave.
Love,
Grant Wednesday August 8
Dear Friends,
Grant was pretty alert and seemed happier today, especially this evening when Bill Hensler was there. He was even sort of making appropriate facial expressions.
Jeri told me his kidneys have improved, and that his kidney function is normal again!
He's getting antibiotics for his eyes again, because the redness seemed not to be going away. The eyes looked better by this evening too.
Tomorrow he has his colostomy. They're hoping to do it using a laparoscope so they don't have to make another big incision. But they might have to, since now he's got scar tissue from the feeding tubes. Keep your fingers crossed.
Love,
Grant Friday August 10
Dear Friends,
Grant's now actually in pretty good shape medically. He hasn't had a temperature in a long time, his white blood count is normal (no infection), kidneys normal, heart rate okay, etc. I guess this means he's over the pneumonia. Dr. Botros says the only real issue now is the decubitus and that's not a big deal (it sure LOOKS like a big deal to me). She said the surgery for the decubitus will actually be two surgeries -- one to get the skin to graft, and the other to move the muscle and do the graft. Nobody's said where the skin is going to come from! It looks to me like they'll need about 30 square inches ... Well, I hope they have a plan.
Love,
Grant Saturday August 11
Dear Friends,
Grant was lots of fun today. He was very awake and interested in pictures, his car (parked outside the window), the mirror, the instruments, etc. He had the Passy-Muir valve on for the first time in a couple of weeks, which allowed him to make sounds. He made quite a lot of noise when the nurses turned him, and seemed to be starting to get the hang of producing noises voluntarily.
That was very nice for me. I could clearly hear his voice -- nothing like language but still nice to hear.
Love,
Grant Monday August 13
Dear Friends,
Grant's been more awake the last few days -- today he answered MANY questions “yes/no” questions, accurately, as far as I know, and attentively. I started by asking him about places he's traveled, and he got all those immediately right. Among other things, he “said” he wants to get back to work, remembers his Mom visiting (as well as visits by many other people), does NOT remember his password on the portable, feels his feet, legs, arms, and hands (I thought that was interesting), and is willing to hang in there.
Yesterday his nurses arranged to have him wheeled outside to a patio, where he could feel the fresh air, see the sky, and get a haircut. I asked him today if he wanted to go outside again and he answered with a definite “yes”. I hope the nurses will continue to take him out -- some (like Jeri and Susan, who had him yesterday) are a lot more pro-active about his care than others.
I haven't heard anything about the decubitus surgery being scheduled. I'll let you know -- I was under the impression it would be this week. I didn't see any doctors today.
I am feeling as though he's more “there” than ever.
Love,
Grant Tuesday August 14
Dear Friends,
Gee, I think we're on a roll. Grant had his eyes open most of the day today. In fact, when I came in this afternoon, he was watching TV with the same degree of attention as anyone. Faina was taking care of him today, and she said he “told” her not to turn on the sound (captioning was on). Maybe he was reading???
Tomorrow he has his butt surgery. And I hope that's the last of the decubitus!
Love,
Grant Wednesday August 15
Dear Friends,
Grant did NOT have the graft surgery today; someone else needed emergency surgery, so the operating room was not available, and Grant was bumped till tomorrow. His surgeon (Dr. Gutman -- is that a great name for a surgeon or what?) was a bit peeved, but a good sport.
Grant was very alert this evening. Martin Newell visited and tried a streamlined alphabet board which worked pretty well. We definitely got farther with it than with any previous one. Grant successfully picked out lots of letters, and spelled a few short words we chose. Then we asked him to spell out a word on his own for us to decipher, and he spelled “can” -- a wonderful choice, I think. We played with this for at least half an hour. Grant nodded off briefly a few times, but came back pretty quickly and wanted to keep playing.
We're thinking about a word board or even a phrase board now. Things are definitely looking up.
Love,
Grant Thursday August 16
Dear Friends,
Grant had his butt flap surgery this morning, and his eyes were open when I arrived at 11:45 or so. He got more awake as the day progressed. By this evening he was pretty alert, like last night. Martin visited and said Grant might have spelled the word “gag” -- hmmm, a bit obscure ... maybe a reference to the trach??
When I got there, Martin had him all warmed up. I asked Grant to stick out his tongue and he did it better than he's been doing it. Not like you or I, not far out, but beyond his teeth, which we have not seen before. And he did it while looking in the mirror, so he saw it, too. Why am I so thrilled to see this? Because he needs his tongue to talk (among other things)! I was beginning to worry that he might not have enough control for that.
I made a word board, which I'm excited about trying tomorrow.
Love,
Grant Friday August 17
Dear Friends,
I tried the word board today: words like “Grant,” “nurse,” “want,” “you,” “go,” “TV,” “light,” “music,” “more,” “less,” “very,” “pain,” “rest,” and various body parts. It's not as easy to use as you might think. I probably should add “blanket,” since he said he was cold today. He's been consistently saying he DOESN'T want the fan on -- that's a change for him.
I was mostly working on getting the system going. No revelations.
The nurses were all excited about how good the surgery looks. They said it looks great (“you'd never know ...”). The surgeon apparently decided just to stretch Grant's skin over the wound, instead of cutting and pasting. I'm glad Grant has a lot of skin!
Love,
Grant Saturday August 18
Dear Friends,
Grant was more tired today, and had a low-grade fever (between 100 and 101). He had a few splendidly lucid moments showing off to his pretty nurse Michelle, though.
I hope the fever doesn't mean anything too bad ...
Love,
Grant Sunday August 19
Dear Friends,
Grant was a lively and communicative guy today, in between naps. He answered every yes/no question I could think of, and he's consistent enough now that I'm teaching all the nurses how to ask if he's cold, in pain, wants TV, etc. We're really getting some useful feedback from him. It's certainly not everything he'd like to say, or everything we'd like to know, but it's a lot more than two weeks ago.
He started responding with appropriate eye movements today, which was amazing to see. We were looking at the pictures of the Adobe people, and I said, of one of the women, that she was cute, and he did the Groucho eyes, out of the blue.
I had a real sense of him PRESENT today. I'm excited!
Love,
Grant Monday August 20
Dear Friends,
Grant was anemic and so he was pretty tired today. He received 3 units of blood. This has happened before, as you may recall, and was a temporary problem. I called the doctor but haven't heard anything back.
Grant got to wear the Passy-Muir valve (the thing he can use to make sounds). He coughed a lot, but tolerated it for several hours.
I started classes today, and am pretty tired -- though nothing like Grant, I'm sure.
Love,
Grant Tuesday August 21
Dear Friends,
Grant's out of isolation! YAY! No more gowns and gloves. No more MRSA. No more pneumonia.
I spoke with the doctor who says the anemia is not a worry. Grant didn't get any blood today, and was pretty chipper.
The docs are having a big pow-wow tomorrow to decide what to do next.
Love,
Grant Wednesday August 22
Dear Friends,
Grant was pretty sleepy most of the day today, though he woke up in the evening and I felt we were communicating. He agreed he was frustrated and angry at the beginning but indicated he no longer feels that way. He is using his eyebrows more to express himself.
The only news today is that the butt-stretch/graft isn't taking on one side. Apparently everything kind of collapsed and the sutures fell out. The other side is still okay, though. I don't know if they have a backup plan, but I expect I'll be hearing from the surgeon soon.
Love,
Grant Thursday August 23
Dear Friends,
Grant was super-alert this evening.
The social worker says there will be a place at El Camino Hospital's
sub-acute next week. I wonder what the
plans are now, though. I think Dr.
Botros gave the order to start the transfer process before we knew the decub flap hadn't taken. I heard that the plan now was to keep him at
One of the physical therapists spoke with me today about getting Grant a custom wheelchair. He's much too big for anything standard!
Love,
From: Joe Pasqua [mailto:joe@mediasnap.com]
Sent: Friday, August 24, 2001 10:27 AM
To: sandy_lafave@westvalley.edu Cc: joe@mediasnap.com
Subject: Visiting Grant
Hi Sandy,
I read that Grant is out of isolation - that's great. I'd like to stop in tomorrow (Saturday) to visit him. Is any particular time best?
Joe
RE: Visiting Grant
Hi Joe,
Any time is fine. I'll be there probably 10:00 to 11:30AM or so, 2:30 to 4:00 PM, 6:30 to 7:30 PM -- how long I hang around depends on how awake he is. He's been amazingly awake the last few days. (When I say amazingly awake, I don't mean like you or me, but compared to how he was.) I would like to meet you, so if you came towards the end of any of those slots, we could meet and I could show you the various communication boards.
In any case, I'll tell the nurses your name. Or you could just say you're “Bruce” (there are several Bruces, and the nurses don't know the difference). :-)
The X10 stuff is working perfectly now, BTW!
Hope to see you tomorrow.
Grant Friday August 24
Dear Friends,
Grant is more and more alert, though he still nods off regularly. I feel I am actually having conversations with him. Today he told me he felt generally good, but that he can feel his butt and it sometimes hurts. The nurses told Dr. Armstrong that Grant grimaced when they worked on his wound. Armstrong says the butt-pain is a very GOOD sign: the butt's at the very bottom of the spinal column, so if Grant has sensation there, he still has some working neurons going all the way down his spine. Armstrong reiterated that we still don't know what's going to happen with Grant's motor function. That is an optimistic statement, for him. (At the beginning of June, Armstrong told me very seriously and regretfully that Grant would probably be quadriplegic.)
Everybody agrees Grant's moving more, but no one can say for sure whether the new movement is really voluntary and not reflex (or the Ritalin). The neurologist says it's all reflex. A couple of people say they have seen what appeared to be voluntary leg movement -- leg movement on command. Even Dr. Armstrong thought he saw it today, but then quickly backpedaled when I pointed out that Grant was wearing his foot booties, which cause his legs to move slightly when the booties squeeze his feet, every few seconds. Still ... ARMSTRONG (Dr. Gloom and Doom) was thinking it...
I also did see what looked like “voluntary” leg movement (3 days in a row) about a month ago, but not lately. It would not surprise me if Grant's hook-ups are still full of static and DO intermittently work under his control. We'll see.
Grant's level of alertness is so dramatically increased in the last week that Armstrong speculates the brain stem swelling may at last be going down.
The physical therapists are starting the process of getting Grant a wheelchair. It's a big deal because he's such a big guy, and needs a lot of special stuff -- lots of safety belts and a pneumatic seat, for starters.
This evening Jim King asked Grant if he wanted to read. Grant said YES. This was new. It was clear Grant was saying HE wanted to read -- not be read to by someone else. So after Jim left, I held up his favorite magazine (New Scientist), and he appeared to read contentedly for 20 minutes or so. When he'd look away I'd ask if he wanted me to turn the page, and he'd signal “yes”. He read a couple of pages (sleeping on and off) and then the nurses came in to turn him. By the time we got back to the reading, he was sleepy, but indicated that he wanted to finish reading the article tomorrow. This was unimaginable even a week ago.
He will probably move to the sub-acute at El Camino Hospital within the week.
I am a happy gal.
Love,
Grant Saturday August 25
Dear Friends,
Now that Grant is reading, I have been showing him your cards and emails from the first weeks of his illness. We haven't yet read them all, of course, because there are so many, and he is tired, and falls asleep, and there are problems adjusting levels of light and focal length, etc. BUT in spite of all these difficulties, he is reading them (at normal speed), and obviously comprehending.
This would be a very good time to send “grown-up” cards to him again, since he can now appreciate them! I'm pretty sure he “gets” jokes now, and understands and is comforted by messages of encouragement. It would be great to receive both “serious” and funny cards, since he needs both emotional support and comic relief. Photographs are great too. We still regularly look at the photos of Adobe people.
Cards and letters from kids are always wonderful also!
Cards are, for the time being, better than emails, because they have pictures, big print, and are stiff enough to hold up without too much shaking or blowing (he has a fan going most of the time). But when we get his portable back, I'll be able to transfer emails from punkalunka and increase the display font size, so he can read emails easily also.
He is getting super clear with yes/no questions -- so much so that the nurses can now communicate with him easily. This is great. I hope they remember to ask him now if he wants TV, music, is in pain, cold, etc.
I have finally been able to ask him some of the excellent and funny yes/no questions sent by Bruce Bullis, Bob Marsh, and others. He obviously enjoys those. (Send more if you like!)
The mailing address for cards is
I expect that visiting Grant will be much easier once he's out of the ICU and in the rehab place. He seems to be enjoying his visitors much more lately.
Love,
Grant Monday August 27
Dear Friends,
Grant spiked a fever this morning. It got up to 103 and they gave him Tylenol and ice packs. By mid-afternoon it was down to 100. Many tests have been ordered. The fever was back this evening -- more Tylenol. Thanks goodness that seems to work.
They stopped his feedings when the fever was noticed, on the theory that it might be caused by aspiration of food -- a very common cause of pneumonia among people with trachs. When the fever was lower today, he was alert and chipper as ever.
I do not like this, but we've been through it many times. Little boat, really big waves ...
Love,
From: Jim King [mailto:jking@adobe.com]
Sent: Monday, August 27, 2001 2:58 PM
To: Martin Newell;
Subject: Progress report on eye tracking
Martin and Sandy: I got a call from Chip Clarke ((888) 276-9700, info@assistivetechworks.com) at Assistive Technology in response to my query about their sales of the ERICA system. He is the person that sells and installs these systems and was a wealth of knowledge about eye tracking but also about people with problems similar to Grant's. He promised to send me an e-mail with a list or various resources that we could look into.
He wanted to know what Grant's “Rancho Scale” number was. I guess this is some rating of ability for people coming out of coma's. There is also a “coma scale”. We got into this issue when we were discussing the posibility of Grant successfully using an eye tracking system.
He also asked me about Grant's eyes and if they were wide
open, etc. I told him that was fine and
that Grant had particularly dark eyes. He
suggested that we send him a picture of his eyes so he could test their equipment on the picture or have people
look at them to see if there might be
any problem. I have my digital camera
with me and if you don't mind,
The ERICA device is a box containing a video camera, lenses, and an interface to a video board that goes into a PC. They sell this and the Windows software as a package for $10,000.00. If they have to come do an install and setup they charge another $2,000.00. He offered to send a system to us for a few weeks to evaluate. In order to do that we need our own PC running Windows with a free slot to insert the video board. There is also a problem in getting the screen and their box (about the size of a shoe box) positioned in a rather direct line of sight to Grant. He has plans for a frame that he will send us if we want. To evaluate the system we would need to rig up some temporary way to get Grant and the screen positioned correctly. The box they have must be positioned just below the computer screen.
The other system that I have uncovered is the Eyegaze system and it is a closed system that has an interface to a second PC that you can control. You can use their closed system to do eye-typing all by itself. I think that the ERICA system sounds better.
I will continue to look into this and find as many alternatives as I can. In a few days we can figure out if we want to move on a particular solution and then do it.
Jim King
RE: Progress report on eye tracking
Hi Jim,
There are two coma scales:
You're welcome to share this info and Grant's picture.
The benefits people at Adobe who have helped me are Valerie Dua and Rhonda Williams. I'll ask the people at the hospital what their rules are re this kind of thing. They might be very interested; there's a rehab facility affiliated with the hospital and they might want a demo for inservice training or something, you know? They have had no problems with letting me run the portable in the room. There aren't a lot of electrical outlets but I expect we could get around that. What would worry them would be anything that would interfere with telemetry. Cell phones apparently do, but I'm not enough of an engineer to know if any of this equipment would. I'm not sure how they'd feel about suspending a monitor from the ceiling, but there is hardware up there for traction cases. Also they have those high tables.
Grant Tuesday August 28
Dear Friends,
Grant's fever yesterday (and today) is due to bacterial infection but according to Dr. Botros, it is not a cause for particular concern. She believes he has a urinary tract infection (“gram negative rods”, according to his nurse D. J.). Grant also apparently has a very slight new case of pneumonia. Both problems are expected to go away with antibiotics. Just to be on the safe side, the docs ordered cultures today from his central line, colostomy, and wound.
I am glad he is still in the ICU for exactly this kind of prompt and thorough attention. His blood was cultured as soon as the fever was noticed, even before the fever spiked.
Grant seemed quite awake this afternoon. He gave definite and clear answers to questions such as “Do you want TV?”, “Do you want music?”, “Do you want headphones?” etc. He didn't want TV or music today, but he did want to listen (with headphones) to some Sue Grafton novels on tape that Dick Sweet brought in. This is the first time I think he's fully realized that those tapes are there for him, and he seemed delighted.
People from Adobe, especially Jim King, have been doing lots of legwork to get Grant a computer that he can type into by directing his gaze to letters on a screen. Grant understands the plan, and indicates that he's interested.
It would be great to get a real message out of him -- as exciting as “first contact” with an alien (for me anyway)!
Love,
Grant Wednesday August 29
Dear Friends,
Grant had no fever today and was as alert as ever. The nurses are very excited to finally be able to communicate reliably with him.
No news on other fronts. They are doing blood cultures every day; they do not yet know the source of the infection. I presume the new infection is going to postpone his transfer to the sub-acute.
Love,
Grant Thursday August 30
Dear Friends,
Grant had no fever again today (YAY!) -- seems tired, though, I think because he's getting big antibiotics again. Still, when he's there, he's all there.
Amy F. from Adobe brought in a big home-made plexiglass alphabet board that uses colors rather than row-column designations for the letters. It seems MUCH easier to use than the cardboard one I made. We tested it on Grant; he, of course, understood immediately how to use it and did fine with it. I didn't realize why the plexiglass is so useful: you can see through it, so you don't constantly have to be looking AROUND the cardboard. Also, it has nothing in the center so he can rest his eyes there and there's no mistaking search for rest. Thank you, Amy!
I brought in a video of the TV show “The West Wing” from last night. Grant indicated that he wanted to see it (it was a re-run of the season finale, which we missed, him being comatose and all). He wasn't continuously awake enough to watch it all the way through, but he did seem interested. I told him that when we get his computer back, we'll be able to watch DVDs on it, and he responded with enthusiastic Groucho-eyes.
Could he BE cuter?
Love,
From: Jim King [mailto:jking@adobe.com]
Sent: Saturday, September 01, 2001 10:47 AM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant's eyes -- update
Well, lets hope that they heal well and we have no problem.
The second thing I had asked about was getting the doctor to ask for the eye-gaze system so that we could try to get the insurance to pay for it. At least Adobe HR had told me that the way it would be raised with the insurance company was via the doctor.
Thanks,
Grant's eyes -- update
Hi Jim,
I spoke with the doc today at length about Grant's eyes. She had spoken with the eye specialist and was partly relaying what he said. Grant had a psuedomonas infection a while back, when the eye symptoms first appeared. The docs thought his eye problem was caused by that infection so they gave him some eye drops that were rather strong and apparently caused his cornea to shed some surface cells, and that's what the gunk was (and is). The specialist said this will heal by itself and is nothing to worry about. The specialist said he was familiar with the eye gaze system and that he was certain Grant's eyes would be fine for such a system, and not to delay getting it because of concern about Grant's eyes.
I hope that's all true! The specialist is going to see Grant again early next week.
Cheers,
Grant Friday August 31
Dear Friends,
Guess what Grant did today?
He spelled S-A-N-D-Y on the letter board all by himself!!
What a guy!
Love, S-A-N-D-Y
Grant Saturday September 1
Dear Friends,
Not much new today. Grant was more awake early in the day. The doc said his chest “is clear” -- I'm not sure if that means his new pneumonia is gone or not. I expect they need to do some lab work to say for sure.
On the down side, the surgeon now says the flap operation didn't take “at all” -- I'd been told that half of it had adhered. It's all “broken down” now, so I'm not sure what happens next with that. I don't think they plan to try anything surgical again for awhile. But it's such a big wound I can't imagine they'd do nothing.
Love,
Hi Joe,
Thanks for the computer!
What a nice surprise! (Every bit as nice as the Pulit Surprise.) We'll use it. Does it charge the battery when you leave it plugged in? How do you turn the sound on/up?
Grant did a very clear “yes” when I asked if you'd visited. I think he's closing his eyes a lot lately because they're tired and healing from some strong medication they gave him awhile back. So he's often more awake than he looks.
Many thanks again.
Grant Sunday September 2
Dear Friends,
Grant got moved back to the CCU this evening, due to low census at the hospital. They say they'll move him back to his nice room ASAP. In the meantime, he's in his “original” room (number 708, I think) -- the one with the little anteroom and bathroom.
They have him back on Vancomycin; I'm not sure why. I didn't see any doctors today. He seemed tired in the afternoon -- maybe because of the “Vanco” (as the nurses say).
Love,
Grant Monday September 3
Dear Friends,
Grant's in a kind of cocoon room -- small, dark, noisy, no windows. Still in the CCU. He has no fever but his heart rate was pretty elevated again (130-140 by evening).
He was pretty awake several times today. This morning I brought in an email we received
from our niece Jennifer who has just arrived in
His nurse tonight was the delightful
Love,
RE: Grant's eyes – update
Hi Jim,
Sorry for the delay. I finally got a written order today from Dr. Armstrong for the ERICA system.
Do you want me to send it to you at Adobe? Or if you're planning to visit Grant, I can just give it to you at the hospital.
Grant Tuesday September 4
Dear Friends,
I guess Grant had a pretty good day today. I've been reading him your emails from April and May. I ask him “Do you remember [name of person]?” and he indicates yes, and responds appropriately to other questions. I have started telling him the date every day (followed by a quiz -- I am a teacher after all). I think he's as amazed as we are that he's been so sick for so long. The emails today made reference to the plasmapheresis, and I explained that to him -- he didn't know at all! It's kind of fun talking to him about those things; his eyes express quite a lot. It's like a macabre game -- “Guess what they did to you THEN?”
His heart rate was down, too (90s), and no fever (“afebrile,” they say).
Love,
Grant Wednesday September 5
Dear Friends,
The ICU has been re-opened, and Grant's been moved back to his nice room again. YAY!
Medically, he seems pretty much the same.
Love,
Grant Thursday September 6
Dear Friends,
Grant's off the Vancomycin because his blood work showed no more infection. I understand that they may take him off the other antibiotic (Primaxin) as well. His heart rate was very high today, so they restarted the Atenolol. In other words, he now doesn't have anything unusual for a guy his age -- except for the CNS trauma and paralysis.
The decubitus remains a problem, of course. The idea now is that they will try the surgery again in a few weeks. He'll move back to Los Gatos Community for a few days for that.
I'm going to ask Dr. Cathy to come back as attending when
she returns from her latest trip to
The wheelchair people made an appointment to come and measure Grant on Sept 17.
So things are moving along. Visiting is less restricted at
Love,
Grant Friday September 7
Dear Friends,
This was a very good day. Grant was more alert today that he's been since this all started. Here's one exchange:
I asked him if he wanted to tell me anything. He indicated yes. I got the word board and the letter board and asked which he wanted to use. He indicated the word board. He clearly conveyed the word “right”, then “arm”, then “pain”. I asked him if he wanted me to re-position his right arm and he said yes. I asked if he wanted me to tell the nurse to get something for the pain. He said no. I asked him if he wanted to tell me anything else. He said yes. He did “right” and “arm” again, and then the word “feel” -- and then did something that amazed me. He asked for the letter board and indicated the letters “S” and then “O” and I said “Sore?” and he said yes. “Right arm feels sore” -- but not pain exactly. Then I asked him to rate the discomfort on a scale of 1 to 10, and he said “2”. I asked if it was bad enough to prevent him from sleeping, and he said “no”.
We also watched an entire episode of Star Trek (Voyager), which he chose over an episode of “NYPD Blue”.
He indicated a lot of interest in eating food, and was even possibly joking around with me and the nurses. I have given the nurses a lot of green beans and tomatoes from my garden, and I asked Grant if he'd like to eat some tuna salad stuffed tomato. He said yes. Then the nurse mentioned my green beans, that he'd probably love some of those too. Now, Grant doesn't care for the green beans all that much, so I told her that she wouldn't be able to lure him with the promise of green beans. She asked him: “Do you want some green beans, Grant?” and he gave her an emphatic NO signal. This cracked us up.
I think he's ready for the eyegaze computer!
Love,
Grant Sunday September 9
Dear Friends,
Grant watched an entire movie (“Galaxy Quest”) today! He nodded off only during the last 45 minutes, and only for a minute or so each time. He was totally into it for the first half. I asked him if he wanted me to bring in more movies, and he signalled yes. I think I'll rent “Caddyshack” next; I know he likes that.
Dick Sweet at Adobe put together an interactive webpage where you can sign up to visit Grant. I know sometimes people come and then find someone else is there, and you feel superfluous. All you have to do here is sign up; you can also remove your name if your plans change. Login requires a username of “grant” and a password of “friends”. The address is:
http://www.sweetshoppe.com/grant
Thanks, Dick!
Grant's still at Los Gatos Community and I still haven't heard
when (or even if) he's going to
Love,
Grant Monday September 10
Dear Friends,
Tomorrow the surgeon is going to work on the ulcer. I'm not sure exactly what he plans to do, but I had to sign a consent. I think it's just some kind of cleaning procedure where they have to put Grant under anesthetic.
Grant is getting more and more able to communicate with the letter board and word board. This evening when Martin Newell and Greg Wilensky were here, we asked Grant if he could think of any improvements to the communications devices. He said yes. We asked what we should add. He very clearly spelled “A” “B” “O” “R” “T” -- a mechanism for saying “abort” or “cancel and start over”. That IS a good idea. Martin suggested prolonged eye contact with the questioner as the “cancel” signal, and that worked very well. Grant started using it right away.
This afternoon, after I asked him the usual questions (“Are you in pain?” “Any visitors?” etc.), I asked Grant if he wanted to tell me anything. He indicated yes. I did “Word board or alphabet board?” He picked the alphabet board. Then he spelled, very clearly, “I” “L” “O” “V” “E” “Y” ... by this time I was crying ... “O” “U”. It was a total wonderful surprise and the longest sustained message from him so far. Just when I thought he couldn't be sweeter ...
Love,
Grant Tuesday September 11
Dear Friends,
Grant's fine today. He had his wound-cleaning surgery and afterwards they put him on a ventilator because they were afraid he was going to be too knocked out to breathe properly -- but he'll be weaned off that in a few hours. There's a lot of “run-off” from his newly-excavated wound; the bed linens seem awfully bloody and drippy, but apparently this is normal. I got to spend a lot of time with him today because school was evacuated around 10:00 AM. I told Grant the news and his eyes got really wide.
Love,
Grant Wednesday September 12 (2001)
Dear Friends,
Grant was rather tired and a little feverish today, so it looks like he's got some new bug. This has happened many times before and isn't necessarily a cause for concern (though it might be). They drew a lot of blood, urine, took cultures from everywhere you can think of, and are checking it all out to try to find the source of the infection.
This means he probably won't be moving to a sub-acute for at least two more days, until they get the cultures back. And infection so far has always prevented him being moved at all. I guess it depends what it turns out to be.
I brought in the newspaper and showed him the big headlines.
Love,
Grant Thursday September 13
Dear Friends,
I heard today that Grant won't be moving to El Camino for at least another week. All their rooms are 2-person rooms, and the other guy in what will be Grant's room got MRSA (myecillin-resistant staph) and so has to be in isolation (i.e., no roommate) until the MRSA goes away. Grant's had MRSA twice now, and another round of MRSA (and vancomycin) is the last thing Grant needs at this point!
Grant was a sleepy guy today. He has a urinary fungal infection, and was getting a new drug for that, which might have been making him sleepy. He also had the same low-grade fever as yesterday -- I don't know if that's caused by the urinary tract infection or something else.
The people at Adobe have been working on getting him a computer system he can operate with eye movements. It sounds like that will be arriving in 10 days or so. I know I speak for all of Grant's family when I say I really want to thank everybody at Adobe -- especially Jim King and Marianne Deaton -- for their kindness and expertise and persistence in talking to vendors and evaluating systems and arranging money, etc.
I have been talking to my students about the weeks' terrible events, and I find myself especially moved watching the outpourings of compassion by and for the people in NYC. So many people's worlds collapsed, just like mine did when Grant got sick. I am so lucky to have received so much kindness and support from all of you. I can tell my students without hesitation that the world is still beautiful and people are still amazing.
Love,
Grant Friday September 14
Dear Friends,
Grant's sleepy again today. Lowest heart rate I've seen in a long time (low 70's). No fever. Anemic -- got 2 units of blood -- maybe because of blood loss in the wound cleaning procedure earlier in the week.
He needs a new central line (this will be his third); the current one is infected (yeast).
Soembody came from the
I'm hoping he'll be more frisky tomorrow, with his new blood. Meanwhile, since he's out of it tonight, I'll go over to Aptos to check out the place, and will come back tomorrow morning.
Gotta go while it's still light.
Love,
Grant Saturday September 15
Dear Friends,
Not a bad day. Grant was somewhat more awake than in the past few days. In the evening he finally stayed awake long enough to watch “Caddyshack” all the way through.
Love,
Grant Sunday September 16
Dear Friends,
The Grantster was pretty awake today. Our niece Amy Hersom visited and Grant spelled out “H” “I” “A” “M” “Y”!!
Dr. Gutman put in a new central line, and took out the old infected one.
Love,
Grant Monday September 17
Dear Friends,
Grant had his first appointment with the wheelchair vendor today, and will have another on Wednesday at 11:00.
Did I mention that the surgeon is planning to try again at
surgical repair of the decubitus this week? Meanwhile, the
Grant breathed room air all day today -- no extra oxygen and no extra moisture. The respiratory therapist said that's a sign his lungs are looking excellent, and a big step forward.
Grant had a bit of a fever tonight though. His eyes don't look any better to me, and I'm putting some pressure on the docs to get another opthalmologist consult.
Love,
Grant Tuesday September 18
Dear Friends,
Grant was sad and low both times I saw him today, though Dr. Botros said he was chipper in the morning.
There has been some activity on the opthalmologist front, though no actual new doc has yet appeared to look at Grant.
Tomorrow they are going to get him out of bed using a special device called a Hoyer lift, and put him in a wheelchair to take measurements for his custom chair. I think he knows what's up with that. I'm not sure he's happy about it. It's blunt confirmation that he will be very disabled for an indefinite period of time.
The plan is that this will be the first of possibly several wheelchairs. At this point he can't really move any part of his body enough to control any chair, so this first chair won't have any operator controls, and will have to be pushed by an attendant.
I guess I'd be depressed too.
Love,
Grant Wednesday September 19
Dear Friends,
Grant was pretty awake tonight. He seems to have a new trick: he can say “no” by moving his head from side to side. He also seemed to be able to move his mouth a little better. The opthalmologist examined him for a long time and prescribed some new eye drops in the left eye. That eye seemed somewhat clearer by this evening.
I went to see El Camino Hospital's business person today. She said Grant's insurance doesn't cover more than 120 days/year in subacute. My insurance (his secondary) covers 100 days/year. Does anyone know if that means he'll get 220 days of coverage/year, or only 120? I.e., does the day count work the way dollars count in doctor bills: the secondary only pays if THEIR limit is greater than the primary's? (Like if the doctor charges $100, and Aetna's negotiated charge is $80 and Blue Shield's is $85, Aetna pays $80 and Blue Shield pays $5; and the doctor writes off the other $15; but if Aetna's negotiated charge is $80 and Blue Shield's is $75, Aetna pays $80, Blue Shield pays nothing and the doctor writes off $20. What I'm asking is, is this going to be a “Blue Shield pays nothing” case since 120 is already greater than 100?) Or do days count differently? I'm sure hoping they do, because anything over the limit must be paid out of pocket, and the fee at El Camino is minimum $40K/month. The El Camino person said Grant would have to go on MediCal eventually, but would have to use up all his assets first -- which won't take long if he needs a year or more of subacute. I'd appreciate any info! Thanks!
Love,
Grant Friday September 21
Dear Friends,
Grant had his decubitus surgery today; things apparently went okay. Now they're trying to figure out a better system for turning him, so they don't pull on it.
I've been looking into the insurance issues -- very complex and disturbing. I will explain further but I have been sitting here for several hours and am too tired now.
Love,
Grant Sunday September 23
Dear Friends,
I've been exhausted the last few days, trying to learn all I can about Medi-CAL and insurance, OBRA-93, trusts, annuities, etc. It is a HUGE complicated ugly mess. The bottom line is that if you need Medi-CAL and you're married, you (the patient) can't have more than $2000, and your spouse can't have more than $87,000 -- total. Medi-CAL takes everything else except your house -- they take stocks, bonds, extra cars, houses (like our house in Aptos), 401K's, IRA's, you name it. If you want to save your stuff, you have to sign it all over to an irrevocable life trust and promise to pay back the state all your Medi-CAL costs after you're both dead.
Also I have started the battle with MY insurance (Blue Shield) for Grant's subacute
and, possibly later, SNF (skilled nursing facility) care. BS (a good acronym for them) says they “coordinate benefits” for subacute and SNF. In
insurance-speak, this means the first
100 days of
However, I am getting expert help and encouragement from my sister-in-law Diana, who -- I just found
out -- is a case manager for Blue Shield
in
People at
Grant really liked “Galaxy Quest”, “Caddyshack” and “Coneheads”. Does anyone know any other movies of that sort (funny, upbeat, not too puerile) he might enjoy?
Love,
Grant Monday September 24
Dear Friends,
Just when I thought Grant was going to El Camino, the
As I've mentioned, the
Today we watched the final episode of StarTrek Voyager, which we missed in May because SOMEBODY was in a coma!
Love,
Grant Tuesday September 25 -- leaving CHLG tomorrow
Dear Friends,
Grant is finally leaving Community Hospital of Los Gatos. Tomorrow
he'll be going down to the Care Meridian facility in San Martin (just north of
I had a little trouble finding the place when I was there in
June. It was very easy to find
The mailing address is Care Meridian 11500 Center Ave. San Martin CA 95020
I have a lot of questions which I suppose will all be answered tomorrow: who will move all his stuff? does he need clothes? can he even wear regular clothes with all his tubes and bags? does this place have official visiting hours, and are they enforced? are there any limits on visitor number or age or species (one of Grant's friends is blind and has a helper dog)? I'll let you know what I find out.
Thanks so much for all your great suggestions re movies and light entertainment. Thanks also to the people from Adobe who have been working on the eye-gaze system, and on enabling his portable to play DVDs.
Love,
Communicating with Grant
Hi Bob,
Communicating with Grant is getting a lot easier. He's a lot more awake and has very definite signals for:
“YES” -- look up, eyes and eyebrows go up “NO” -- look down, eyes go down “CANCEL” -- i.e., let's start this again (when transmission gets too confused) -- prolonged eye contact with questioner
The alphabet board is a 5 X 5 grid, with 25 letters (no “Z”).
2 3 4 5
1 A B C D E
2 F G H I J
3 K L M N O
4 P Q R S T
5 U V W X Y
You indicate a letter by row and column: “A” is 1,1; “N” is 3,4, etc.
You cue him for each letter, first for its rown, then its column.
He indicates the numbers by looking at the corners of the page, where the numbers are printed. So the whole board looks like this:
________________________________________
1 2
5 -- long blink
1 2 3 4 5
1 A B C D E
2 F G H I J
3 K L M N O
4 P Q R S T
5 U V W X Y
3 4 _________________________________________
It's still pretty primitive. There's nothing for space between words, for example, so you have to figure that out yourself.
The word board works exactly the same way, except there are 25 words.
You don't have to use the boards if it's too tedious or he's tired. You can find out a lot with YES/NO questions. You need to be sure to ask YES/NO questions, and it helps to end with “Look up for yes and down for no.” For example, don't ask “Which do you prefer, Mozart or Beethoven?” Instead, say “Of Mozart and Beethoven, do you prefer Mozart? Look up for yes, down for no.”
He's also supposed to get an eyegaze computer very soon, so he might be able to “type” whole messages in a few weeks.
Hope this helps. I know he'll enjoy seeing you!
Grant Wednesday September 26
Dear Friends,
Grant moved to Care Meridian today, according to plan! A few small hitches. The transport team showed up at 11:30 as promised, but they were the wrong team with the wrong kind of van for him, so there was some delay. But he was all settled in when I got there at 4:00.
People there seem really nice. He has a roommate, but the room is nice and big, so I don't think there will be any problems with that. All the patients there are in much the same shape as Grant, so there's not a lot of noise or carousing. The other guy has a TV, but there's so much noise from the machines that you can't hear it.
There seem to be animals in the facility: a dog and a cat. Very cute, and a great idea, I think. I'm allergic but the air is kept very clean and well-filtered, so I didn't sneeze once.
The drive back to our house took about 35 minutes -- not bad at all.
There will be great star-gazing from the place; it's in a very open area without much ambient light. Grant is looking forward to that.
All things considered, a good move, I think!
Love,
Grant Thursday September 27
Dear Friends,
I think Grant had a good day today, considering he's getting used to a whole new place. The facility currently has only four patients, so they moved Grant into a room by himself with a pretty view of farms and hills. I'm glad they did that. All the patients are in private rooms at this point, but Grant's current room is really a double, so I imagine he'll get a new roommate at some point.
Did I mention that all the patients are men and all the employees (including the doctor) are women? They take women patients (and they have had male employees); there just aren't any at the moment.
I met the occupational therapist and the speech therapist. Both are enthusiastic, energetic, kindly girls. They remind me of my nieces in the Grow family. I liked them both right away, and I think Grant will too.
The facility has an “activities director” who interviewed me today at some length about Grant's interests, hobbies, favorite movies, musical tastes, TV shows, etc. so she can design activities that will interest him. I didn't know such people existed. She was very excited that I had actually made a list of Grant's favorite TV shows. She wanted a copy IMMEDIATELY, and was disappointed that I didn't have it with me.
The place seems in some ways like a super-nice residential hotel, or the college dorm of your dreams. There's a big open kitchen-living room area with baked goods, juice, fruit, sodas, and coffee always available for patients and families. They cook the patients' meals in the kitchen and it looks like anybody who's around can eat. The staff does the patients' laundry. The food looks really good. They have satellite TV, HBO, and surprisingly pretty comforters for the beds. The decorative “art” is generally serene and inoffensive (lots of pictues of sheep -- sheep grazing, sheep cuddling). When I left tonight at 7:30 PM, there were at least four staff members still on site (remember there are only four patients). I've got to say I'm impressed so far. They can't do enough for him, it seems. And I think he's noticing that, too.
I brought clothes for him today, and I think tomorrow he'll be dressed in real clothes for the first time in six months!
He also smiled a real recognizable smile today!
Love,
alphabet board
Hi Bob,
I'm going to take you up on your suggestion to post the alphabet board directions. I wanted to explain why I didn't do it before now. I figured once he got into rehab, the speech therapists would no doubt have some different and better system, and I didn't want to frustrate Grant with some people using one system and other people another one. (Grant did complain that he was frustrated that some of the doctors asked him to blink once for yes, twice for no, while others wanted once for no, twice for yes, and others understood the eyebrow raise as yes, others interpreted it as confusion, etc.)
Well, I spoke with the speech therapist yesterday and she said they DON'T have anything better, and that this was the coolest system she'd seen!
So we'll stick with it until Grant gets proficient at using the eyegaze system.
Grant Friday September 28
Dear Friends,
Grant was sleepy today, and seemed sad. I asked him if he missed his friends at
I told him his friends at
The phone number at Care Meridian is 408/686-0758. Bob Marsh suggested I explain how to use the alphabet board, so if you visit him, you'll maybe have a better idea how to get Grant to tell you what he's thinking. If you're on this list and you live thousands of miles away and can't visit, you can skip the rest of this message -- unless you're interested in this kind of thing. Martin Newell at Adobe made up the system. I didn't tell you folks about it in detail before now because I figured once Grant got into rehab, the speech therapists would no doubt have some different and better system, and I didn't want to frustrate Grant with some people using one system and other people another one. (Grant did complain that he was frustrated that some of the doctors asked him to blink once for yes, twice for no, while others wanted once for no, twice for yes, and others understood the eyebrow raise as yes, others interpreted it as confusion, etc.) But the speech therapist at Care Meridian said they DON'T have anything better, and that this was the coolest system she'd seen!
_________________________________________________________________
HOW TO USE THE ALPHABET BOARD
Communicating with Grant is getting a lot easier. He's a lot more awake and has very definite signals for:
“YES” -- look up, eyes and eyebrows go up “NO” -- look down, eyes go down “CANCEL” -- i.e., let's start this again (when transmission gets too confused) -- prolonged eye contact with questioner
The alphabet board is a 5 X 5 grid, with 25 letters (no “Z”).
1 2 3 4 5
1 A B C D E
2 F G H I J
3 K L M N O
4 P Q R S T
5 U V W X Y
You indicate a letter by row and column: “A” is 1,1; “N” is 3,4, etc.
You hold up one copy of the board for Grant to see. There should be two copies near the bedside. The other copy is for you.
He indicates the numbers by looking at the 4 corners of the page, where the numbers are printed; he indicates “5” by a long blink (very obvious when he does that). It's helpful to begin by asking him if he wants to use the board, and then “calibrate” where he looks by asking him to look at each corner and do a “5”.
So the whole board looks like this:
________________________________________
1 2
5 -- long blink
1 2 3 4 5
1 A B C D E
2 F G H I J
3 K L M N O
4 P Q R S T
5 U V W X Y
3 4 _________________________________________
You cue him for each letter, first for its row, then its column. You ask, “What's the row for the first/next letter?” “What's the column for that letter?” Remember that his numbers are on the OPPOSITE sides of the ones on your copy. The correct numbers are written on the cardboard back.
It's still pretty primitive. There's nothing for space between words, for example, so you have to figure that out yourself.
The word board works exactly the same way, except there are 25 words.
You don't have to use the boards if it's too tedious or he's tired. You can find out a lot with YES/NO questions. You need to be sure to ask YES/NO questions, and it helps to end with “Look up for yes and down for no.” For example, don't ask “Which do you prefer, Mozart or Beethoven?” Instead, say “Of Mozart and Beethoven, do you prefer Mozart? Look up for yes, down for no.”
Love,
Grant Saturday/Sunday September 29/30
Dear Friends,
Grant's pretty much moved in now. He's totally set for media equipment, and his room is very pleasant. The people at the facility seem nice. The air conditioning broke today -- it was about 100 outside -- but they got it back up and running pretty quickly.
I finally met the doctor, Dr. Miner. She's young-ish and seems competent and personable. She showed me Grant's flap; it has not broken down yet but she is concerned that it might. I thought it looked great compared to the flesh crater I saw before.
Grant had his eyes closed most of the day today, but he wasn't sleeping the whole time, either. I talked to him for a long time and he kept his eyes closed but made appropriate eyebrow raises in response. You might remember that if you visit -- ask him to let you know if he's awake, but tell him he doesn't have to keep his eyes open. It's possible his eyes are still bothering him.
I stayed in Aptos Saturday night, and brought back some things, including a plastic bottle of Canadian maple syrup. Unfortunately, I left the syrup in the AfterEffects bike bag in the car and it got very hot in there -- we're talking Gilroy here, remember -- and the bottle kind of exploded all over the contents of the bag. That was my big excitement of the day. No permanent harm done, though!
Love,
Grant Monday October 1
Dear Friends,
Well, October already -- that makes it six months.
Grant's still a less-than-happy camper at Care Meridian, but I met some more nice people today, and I think he's in good hands. Grant just doesn't seem interested in anything. He says he's tired. I guess they make him work in the mornings, so that might explain it.
There is a lot of concern about his flap failing, but apparently it doesn't look like it's going to fail completely. According to the nurse, they were able to insert a Q-tip four inches into the wound, and that's not good. They save they may be able to “save it” by “packing” it -- maybe you know what that means.
Love,
Grant Tuesday October 2
Dear Friends,
Grant impressed people today; he had an alert day for the first time since he's been at Care Meridian. They had no idea until today how clear and responsive he can be.
Dr. Miner says the flap is definitely worse today, and she's calling in a plastic surgeon for a consult.
I was thinking I might write an update maybe every other day now. Medically Grant is still fragile, but he's stable, and things seem to be changing very slowly now. Naturally I'll let you know right away if there are any big developments, good or bad.
We still need and cherish your support, encouragement, advice, etc.
Love,
Grant Thursday October 4
Dear Friends,
Grant's much the same. The plastic surgeon was in to consult about his wound. He said it would require some “creative wound management” -- by which he meant sugar, leeches, and maggots! (I am not making this up.) It is a bad one. He also said its healing would be a "long term process" and that it might never heal. God.
Grant has seemed tired and unresponsive lately. His blood count ("crit") is low,
and they are thinking of transfusing him again. Maybe that's why he seems so
low and miserable. On school days, I get
there in the afternoons around 3, and stay until 7 or so. It would be nice if
more people could visit him. I know he's
lonely there. He's not used to the people yet (they seem nice enough) and
misses his routine at
On the positive side, he has no infections right now.
Does anybody know someone in that neck of the woods who can
do therapeutic massage on site? Tim, the guy who came to see him in
Thanks!
Love,
Grant Sunday October 7
Dear Friends,
Poor Grant has been very out of it the last two days. He's been getting various vitamins and other meds that made him constipated, and Saturday night he vomited quite a lot. He's also being weaned from the Ritalin and so he's not as alert generally. Saturday it was as if he was comatose again; today he opened his eyes and stared wide-eyed. He hasn't been responsive at all -- doesn't make eye contact or signal "yes" and "no". It's discouraging -- but on the plus side he doesn't have any fever or apparent infection, his wound is looking better, and he seemed better today than yesterday.
Love,
-----Original Message-----
From: Joe Pasqua [mailto:joe@mediasnap.com]
Sent: Saturday, October 06, 2001 11:29 AM
To: sandy_lafave@westvalley.edu Cc: Joe Pasqua
Subject: Visiting Grant
Hi Sandy,
I'm sorry I haven't been in to see Grant for a while. Life at a startup has been pretty overwhelming lately. I'd like to go down tomorrow (Sunday). Are there any specific times that are better than others? I'd like to see you too if you're going to be there.
joe
RE: Visiting Grant
Hi Joe,
Sorry, I didn't poll my mail till tonight (Sunday). It's just as well you didn't come today, though, because Grant was pretty out of it.
I'm usually there between 3 and 7 on weekdays; I get there earlier on weekends.
Feel free to come by whenever you'd like. Everybody who's been there is impressed by the place, and it would be nice for both of us to see you.
Grant Tuesday October 9
Dear Friends,
Grant was a more awake today, but not much more responsive. He did do his "up for yes" once, though.
The good news today was that his latest labs were excellent. No anemia at all, no infections!
The bad news today was that his flap is coming apart in one of the spots where they thought it was okay. So now he has a new wound about two inches wide and two inches deep, in addition to the other opening. Bring on the maggots.
He also got another bed -- another Clinitron, same technology, but not as heavy (the Care Meridian people were worried about their floors -- the old bed weighed 1300 pounds.) I got to see the guys set it up: it's full of fine powder, which they agitate like water. Very surreal.
I hear the eyegaze computer has arrived at Adobe and the folks there, especially Dick Sweet, are figuring out how to use it. Martin Newell said the system has some quirks that make it rather frustrating to use, but that it's "almost there." I totally trust these guys -- if anybody can make it work, they can!
Love,
Grant Thursday October 11
Dear Friends,
Grant seems to be coming out of the funk he's been in for the last week or so. He was bright-eyed and awake today, looking around, and responding some to yes/no questions -- not as much as he has, but much better than a few days ago. There haven't been any smiles in a week or so, but he's got some really dramatic side-to-side head movement. He's been noticing the birds outside the window, and was staring out at (what looked to me like) a coyote!
Dr. Miner (his new main doc at Care Meridian) is happy with the way his wound looked today. Grant has a pseudomonas infection in the wound, so her first priority is to stop that before it spreads and makes him sick. She's going to start using some kind of special wound suction device that oxygenates and sucks out bad stuff; also she's treating the wound with enzymes that like to eat the dead tissue. Miner said today that the wound might actually heal without another surgery if it keeps improving. That would be something!
Love,
Grant Saturday October 13
Dear Friends,
Grant was pretty awake today. I read to him from New Scientist and we watched some TV. They have lots of channels here: cable and HBO! "High Fidelity" was on cable, and Grant was very interested. He watched the whole thing with captions (the TV happened to be in that mode and I didn't see any reason to change since Grant seemed not to be having any difficulty reading, and I figured he might as well get the practice). Then he listened to some of a Tom Clancy novel on tape that Kathy Dougherty got him. Then he started to watch "Crouching Tiger Hidden Dragon" (also with captions).
He was answering yes/no questions pretty reliably. I asked him if he wanted to say thanks to Kathy for the book on tape, and he indicated yes. I've often told him about these emails (Grant's parents call them “Sandy-Grams”). Today it occurred to me to ask Grant if he wanted to say "hi" to you all, and he indicated a very definite yes. I tried to use the letter board with him but we didn't get very far. He spelled out "W-H-E-N" but then I couldn't get any more. I talked at length about when he could come home, get out of bed, lose the trach, talk, eat food, etc. Maybe I addressed what he was asking. Not that I have any answers ...
Love,
Grant has been very sick
Dear Dennis,
This is a letter I'm sending to folks I haven't talked to in a while. I'm not sure what we should plan for Thanksgiving in light of these events!
I’m writing to update you about Grant. Here’s the story so far.
In mid-March Grant came down with what appeared to be a non-specific virus. It seemed to go away by itself, but then it reappeared and got much worse. On March 28, Grant left work because he was so exhausted. On March 29, he was too sick to walk downstairs for supper. On March 30, he began to run a high fever, with bad headache. We went to the doctor and Grant got antibiotics. That night he began to lose control of his legs, and he fell going to the bathroom. He was unable to get up by himself. On March 31, he was even weaker; by this time we were using a bedpan. We finally went to the hospital in an ambulance, because Grant couldn’t manage the stairs.
The doctor on call said he probably just needed rehydration, but that didn’t help. By Sunday Grant was incoherent, and by Sunday night he was in a coma. The diagnosis was Acute Disseminating Encephalomyelitis (ADEM) of the brain stem -- very rare and life-threatening.
The coma lasted about eight weeks. Despite what you see on TV, most people don’t snap out of a coma all at once. After about four weeks, Grant opened his eyes; but comatose people all open their eyes for a few seconds at a time after four weeks, and they’re still comatose.
By early June Grant was able to signal “YES” and “NO” by blinking. He couldn’t move his arms or legs voluntarily. He ended up in the ICU for six months because he began to have numerous complications -- “nosocomial” (hospital-acquired) infections, one after another. He got pneumonia a couple of times. He got one huge (30 square inches) bedsore, which he had to have repaired surgically twice. It’s still a problem, and he cannot start physical therapy or even sit in a wheelchair until it’s better. He also has a couple of other bedsores. He’s had a colostomy to divert the poop away from his bedsores.
He’s occasionally much more awake now. He was transferred to a rehab facility September 26.
He is sometimes awake enough to spell messages using blinking and eye-direction, with an alphabet board. He has spelled “I L-O-V-E Y-O-U” among other things. For the last few days he has not been awake enough to spell anything -- it’s almost as if he’s comatose again. Brain injuries are apparently like that -- one step forward, two steps back, very very very slow progress.
No one knows whether or to what extent he will recover. He still can’t voluntarily move anything below his neck. He can’t talk because he has a trach, and doesn’t have much tongue control anyway. No one has ever had what he had for as long as he had it and lived, so he is breaking new ground, medically speaking. He may be quadriplegic for life. He may recover some voluntary movement. No one knows. What’s certain is that he will be very sick and unable to come home for at least another year.
Another terrifying aspect of this is financial. His medical bills so far total over $3 million. Insurance has paid most of that, but insurance doesn’t last forever -- you go on long term disability and then you start getting aid from Social Security, and when your finances are exhausted and you’re down to $2K, you can go on MediCAL. Only MediCAL covers stuff like home care -- and it looks as though Grant may need a full-time attendant for the foreseeable future. I am told there are ways to protect at least some of our assets, however, and I am looking into those. Apparently you can put everything into some kind of trust that pays a fixed amount to the “well spouse” per year, and then after you’re both dead, the State is reimbursed from your estate. (Not a bad idea for us, actually, since we have no kids.)
I haven’t even started to plan for stuff like making our house accessible. I don’t look forward to dealing with contractors.
I’m as well as you might expect, given all this. It’s been a nightmare. I thought he’d surely be much improved by now, but many days he’s unresponsive and seemingly no better than early June. I miss him so much. I hope he is rebuilding his nervous system inside -- I think about plants and how their root systems grow invisibly before you see any growth or flowering above ground.
It’s been like we’re on a very small boat in a very turbulent sea. I hope the weather changes; I suppose it always does.
I am grateful to you all who have sent email messages and cards and videos and books on tape, etc. I am humbled at how kind people have been throughout this.
Keep us in your thoughts!
Love,
Grant is at Care Meridian,
Grant Monday October 15
Dear Friends,
Grant's Dad Clarence scanned a lot of Munsey family photos and sent them to me on a CD. Grant and I looked at them again today. They really hold his attention.
A particularly adorable one is attached.
Love,
Grant Wednesday October 17
Dear Friends,
Grant seems just the same today -- not as unresponsive as last week but not at any peak of responsiveness either. I don't know what to tell you. I see him 3-4 hours a day. I don't have much to say -- I've said everything I have to say hundreds of times -- mostly he stares. At least he's got his eyes open and he looks around some, too. I hope he's doing some serious healing on the inside.
Love,
Grant Friday October 19
Dear Friends,
Grant had lots of excitement today. Dick Sweet and Jim King and others from Adobe brought down the eyegaze computer and did the first pass at getting it set up. Dick made a beautiful adjustable frame (he calls it a “gantry”) to mount the flat panel display so Grant can see it from any angle. Grant watched with great interest as they made many attempts to calibrate the system in his room. There's a lot of infrared light in there, apparently, even with the drapes closed and the lights off; plus Grant's eyes aren't particularly big, so calibrating for him is tricky.
I used it and it worked pretty well for me. It was surprisingly easy to get the hang of the typing part; I didn't do anything fancy, like mouse controls, though.
Grant didn't get as far as any actual typing because of difficulties getting him calibrated. Dick was on the cell phone with the designers (engineer to engineer), and is going to send them some floppies of pictures of Grant's eyes and other data.
Grant is also getting his first Passy-Muir speaking valve at
Care Meridian next Tuesday. He had a
couple of those at
After everyone left, I asked Grant if he wanted me to say thank-you to all the people at Adobe who've gone to all this trouble on his behalf. He did a definite “YES!”
Love,
P.S. I gather that some people didn't get the photo of L'il Cowboy Grant, so I put it on the punkalunka home page -- http://www.punkalunka.org -- at least I think I did...
Grant Monday October 22
Dear Friends,
Grant has been pretty out of it the last couple of days. I wonder if we ought to go back on Ritalin; he really hasn't been the same since he's been off it. It's hard to even get a "yes" or "no" from him -- I didn't get a single one today, though his eyes were often open.
The eyegaze system isn't working as well as we'd hoped it
would. Grant's eyes don't register
enough of a signal to get it calibrated, and the keyboard doesn't come up until it's
calibrated, so Grant's never even been able to begin any typing. Dick Sweet and Jim King are going to try to
get some doctors involved, to see if
there's anything medical they might do to make things work better. I hope that's possible. It turns out the DON
(Director of Nursing) at Care Meridian has been looking for an ophthalmologist
for another patient, but can't find anybody willing to come over to the place. She's down
to cold-calling MDs from the phone book. Geez, I knew it would be inconvenient for us, but I thought they had enough DOCTORS
in
Grant's now connected to a machine that vacuum-cleans his wound. It drains this liquid that looks a lot like lobster bisque. The animals (cat and dog) are extremely interested in the drainage fluid and obviously annoyed that it's all sealed up.
The big excitement of the weekend was that Grant's fancy bed began to leak the fine white powder, so there were these little snowbanks of it beginning to form on the floor. The bed company had to send an emergency repair person out on Saturday night. It was important to fix it right away because you don't want that fine powder floating around the trach.
I wish things were moving forward faster, or at least not moving backwards! I wish Grant could answer some questions at least so we'd know what he wanted, if he's in pain, etc. At least he doesn't seem distressed.
Love,
Grant Wednesday October 24
Dear Friends,
I spoke with the doc today and we decided to put Grant back
on Ritalin. She's going to build up the
dose gradually so he won't be back to his
I had a very unproductive appointment with a lawyer today. I wanted to ask a lot of questions about conserving assets, Medi-Cal, OBRA 93 trusts, etc., and he was this bozo trying to save me probate costs and estate taxes -- it was really funny, in a way.
ME: If I put the Aptos house in my name, and started the clock on the 36-month waiting period, would that nonetheless be construed as fraudulent transfer since Grant's already sick?
HIM: ... and the trust documents come in a nice binder.
I understand how someone could want the "instrument" he was advocating -- heck, I understand why WE would want it -- but, as the Quakers would say, his words did not "speak to my condition." I thought he'd know a lot more; his firm has a very informative web site.
Does anyone know a good lawyer who specializes in "elder law"? Medi-Cal eligibility? Financial planning including setting up trusts and annuities? This lawyer I spoke to today said lawyers don't do annuities -- he said I needed a financial planner. Is this true??? Isn't a charitable remainder trust sort of like an annuity?
Why didn't I take Business courses in college?
Love,
They may have found an ophthalmologist. What should we be asking him? Do you want to talk to him?
Grant gazes longingly at the eyegaze system. Its shape and general monumental look reminds me of the Iron Giant (great movie) -- a sweet and friendly presence.
Grant Sunday October 28
Dear Friends,
Grant's been a sleepy guy Saturday and Sunday. He was sleepy Friday also, but perked up quite a bit when Martin Newell set up the eyegaze computer and started to play with him. We got farther than before. The system picked up Grant's retina reflection, so he finally passed the first calibration step. There are two calibration phases; we still didn't pass the second one, but Martin has a theory about why.
So maybe after all that excitement Friday we tired him out for the whole weekend.
I think the Ritalin is kicking in, but slowly.
I got to watch the physical therapist work with Grant. She is a petite Filipina named Leeza, and she kicks butt. She rubs a wet washcloth on his face to make him open his eyes. "Grant! Open your eyes! You cannot be passive! You must watch!" Leeza is a tough cookie, but extremely encouraging also. She talks as if there is just no doubt that he can recover movement. I like her attitude.
Thanks for the lawyer and financial planner recommendations!
Love,
Grant Tuesday October 30
Dear Friends,
I had a big pow-wow with Dr. Miner (the chief doc at Care Meridian), and a couple of the therapists. The Care Meridian corporate case manager was also in on the meeting via phone. The purpose of the meeting was partly to satisfy the insurance companies, and partly to set goals and expectations for Grant's therapy.
This meeting upset me very much.
Dr. Miner said Grant's diagnosis has changed; I didn't know that. It is not ADEM any more; it is now "brain stem encephalitis". I think they are now de-emphasizing the myelin loss and putting more emphasis on the cell body loss. Dr. Miner said the prognosis for recovery of motor function is poor. About 40% of people who get brain stem encephalitis recover, but they recover right away. If Grant were going to get better, something would have happened by now, she said. She is going to do some research and see what she can find out any reason to be more optimistic.
Grant's wound is doing better. Dr. Miner said the surgeon, after two failures,
recommended "secondary closure," which seems to be the medical term
for "leave it alone now." But Miner has not ruled out the possibility of another surgery, by a
different surgeon. She said there also
may have been problems with his post-op care at LGCH -- not the right bed, too much/too rough turning. She
was especially annoyed that he didn't get a different bed. I know the people at
Grant has been less alert at Care Meridian than at CHLG. So Miner has never seen him successfully use the letter board or the word board, and thinks his cognitive functioning is problematic (she said he appears to have "severe cognitive deficit"). Stopping the Ritalin has not helped matters. The therapists both noticed a dramatic difference after it was discontinued, and of course we all did too. Miner was not aware that Grant has shown what seemed to us to be excellent cognitive skills -- e.g., suggesting we improve the letter board by adding an "abort" signal, spelling various things, using the word board to say his arm hurt, etc. This was news to her. She is going to add another stimulant (bromocryptine), in addition to the Ritalin. She says it's a good drug for increasing awareness, though from the WWW, it looks like it's got something to do with breast-feeding(!) as well. I hope we see more awakeness soon; he did seem a bit better again today.
Love,
Grant November 1 Thursday
Dear Friends,
I think Grant is more awake today. I reminded him that yesterday was Halloween and asked him to indicate on the letter board the first letter of the name of the current month, and he indicated "N". I did some Venn diagrams with him, and his logic seems fine. We talked about Halloween and I told him about all the kids who visited -- did he remember Matthew? Javor? Leah? (kids who didn't come to our house but live in our 'hood); he said he remembered, and wanted to see the photos I took last night. He got tired after a half hour or so, but that's not bad.
Love,
Hi Jane, [Jane Dyson, one of the nurses from LGCH – she brought a Star Trek video compilation for Grant]
Sorry I keep missing you!
I got your note
yesterday and also the note and video from your other visit.
I wish I could have seen you, and Faina!
Thanks so much for taking the
time to come by and see Grant. I
appreciate it that you say he looks good.
Care
I have been pretty weepy this week from the conference with Dr. Miner, the head doc at Care Meridian. It turns out she is an old colleague of Dr. Armstrong, and talked to him about Grant just last week. I was wondering if that's why she was giving such a poor prognosis; that's exactly what he said also -- well, actually, no, what she said was worse, since at least Armstrong saw Grant more alert.
I am beginning to wonder if they are right; that's why I am
so sad. When Grant was at
For me, it's almost LESS painful when he's sleepier, because he's suffering less then. When he's more awake, he knows more what's going on, and I feel he looks forward to my visits, and counts on me more, and is very sad when I leave. This is much harder for me; it breaks my heart to see him so sad and helpless. He tries so hard to stay awake when his friends come and work with him on the computer, and he just can't. I know HE could get it working if he were himself; it is just the sort of project he has expertise in -- 3-D math and optics. I wish I weren't so sad myself, so I could be more "up" for him. I feel like if I were just more cheerful and less needy myself, I could be more helpful. If I listen to the doctors, though, I can't be optimistic, and I have to think about myself, and then I feel like I'm abandoning him, and that makes me feel worse! The only thing I want is impossible: for things to be as they were before.
Geez, I'm crying all over the keyboard. And I dread the holidays coming up too...
I know I have to let go and just let things happen and keep letting myself be drawn out of myself and love the world and the weather and the stars and all that; but if I start to become reconciled, I feel disloyal to Grant. It's like if I go on with my life, I accept the situation in all its horror, and it's just too horrible to accept and stay sane.
Thanks for reading this. I think it helps to say this stuff.
And thanks for visiting Grant!
Grant Sunday November 5
Dear Friends,
Not much to report -- a pretty ordinary day. We looked at photos. I cut his nails. He smelled my sandwich. I watched "The Sopranos" (they have HBO) and the World Series; he slept. Pasquelina, a very nice nurse, put in the Passy-Muir valve; he blew it out twice (all the way across the room), but did manage to hum a bit.
Love,
Grant Tuesday November 6
Dear Friends,
I think Grant is waking up again. Yesterday he read a whole article in New Scientist magazine. I started to read it to him, but I noticed he was following with his eyes, so I asked him if he wanted to read it himself, and he indicated yes. Today we re-read Chris Lankford's article about ERICA (the eye-gaze computer) and started to watch Dick Sweet's DVD of Toy Story 2.
Grant's been doing a lot more yes/no answers, though still
not as frequently as before. Today I was
telling Grant that I would be late arriving
in
I forgot to mention that last Friday Martin Newell got the ERICA system working even better. There is at least one anomaly when Grant uses it, as opposed to everyone else: his straight-on image is totally washed out, but you get good contrast from the sides. Also his pupil does not show up as well as anyone else's. I am wondering if those two oddities might be related. Martin thinks the ERICA system may need a slight adjustment also.
The Care Meridian nurse told me today that Grant's wound is
looking much better. Grant should have his wheelchair in a few
weeks also; we hope by the time the chair comes, the wound will be healed
enough that he can sit in the chair.
He's been outside only once in the last seven months. His room at Care
Meridian has a nice big window that actually opens, (unlike the window at
Love,
Grant Thursday November 8
Dear Friends,
Yesterday (Wednesday) Grant got a fever. Everyone was shocked, but the Care Meridian folks were right on it. I was impressed! They called the docs and drew blood and started him on his favorite antibiotic Vancomycin -- all within the space of a few hours. The highest fever he's had so far with this current infection is only 101.4 -- not good but it's nothing like the 105 he spiked when he had pneumonia in July. The blood cultures show he's definitely "brewing" something, though they're not sure yet exactly what it is.
I saw the wounds both yesterday and today, and I've got to say I'm amazed at how fast the big one is healing now that he's got that vacuum device going. It's been about two weeks and the wound has shrunk by half -- now only about 4 by 4 inches and not nearly as deep. The smaller wound has also shrunk visibly in the last 24 hours. And the smallest has lost all its tunnels. Dr. Miner is calling in a plastic surgeon to try to close things once and for all. The nurses all think this is a good plan, because the longer it takes to close on its own, the more vulnerable he'll be to accidental re-opening.
The best thing, though, is his level of consciousness today. He was tired from the Vanco but still as alert as I've seen him. I felt we were actually conversing today -- for the first time in weeks. He read some cards and emails, and looked at the photos of Adobe people again -- he hadn't seen them in a couple of months and was very interested. I asked him if he was "in there" and he made a definite YES signal; I asked if he still had "all his brains" -- another definite YES. He was even sort of smiling.
I saw a lawyer recommended by Bob Marsh yesterday -- the guy seemed very capable and knowledgeable. I guess all the uncertainty about outcomes makes this a very tough case, because we don't really know what we're planning for. He said we should plan for the worst and hope for the best, of course -- the worst being complete incapacity, the best being return to work with at least some mobility and independence.
No word yet on the Big 'n' Tall Wheelchair. But maybe he'll actually be able to use it when it arrives!
Love,
Grant Sunday November 11
Dear Friends,
Grant's biggest problem right now is that nobody can start a good IV line on him to administer the Vancomycin. The people at Care Meridian finally put one in his foot, which they thought would be temporary (pedal IVs hurt). But that's the best anyone has been able to do. The problem is that he has so little muscle mass that the tourniquet doesn't have anything to bind up and push with, so the veins are “slippery” like spaghetti and you can't get in.
Friday night a special nurse called the "IV Queen"
came all the way from
I don't know what they intend to do about this. It depends if he really has to have Vanco (it has to be administered IV), and for how long. The infection seems mild to me, so maybe the Vanco will run only a couple more days. On the other hand, the course is sometimes three weeks or more.
The medical people have had this problem since Day 1 in the
emergency Room, when they ended up sticking him in his foot. Grant was a "tough stick" before he
got sick, and now he's pretty much impossible.
At
Meanwhile, he's been pretty zoned out from the Vanco -- an extremely powerful drug. It's always worked for him, though, so I guess it's worth it.
Love,
Tuesday November 13 -- Grant's back in
Dear Friends,
Grant's apparently got a host of minor problems, so to be on the safe side, the Care Meridian folks decided to transfer him back to Community Hospital of Los Gatos. So Grant rode in the transport again -- here comes another protracted billing exchange with American Medical Response! The IV in his foot went bad, and nobody could stick him, as I described in the last message. He's still got a low-grade temperature, and has been vomiting for a couple of days. He has blood in his urine and his kidneys are reacting badly to the Vancomycin. Dr. Botros says none of these things are inherently worrisome and all are potentially fixable.
I hope they can find him a Clinitron bed and a vacuum device for his wound, so that therapy can continue to progress. It probably wasn't good for the wound to ride in the transport.
When I left this evening, they'd already put in a central line. Dr. Armstrong will see him tomorrow.
He is pretty out of it, as far as I can tell. His eyes are often WIDE open, but he seems asleep. You can wave your hand in front of his eyes and even move your finger toward his eyeballs -- he doesn't respond. It's weird. He'll track and look right and left if you insist, but he seems very sick, and tired, poor baby.
I don't know how long he's going to be in
I was pretty upset about this sudden move, but the doctors are not particularly worried. We have been warmly welcomed back to the CCU; he is in the CCU (not the ICU) in one of his old rooms (the first one). I don't know the number, but everyone knows who Grant is!
Love,
Grant Thursday November 15
Dear Friends,
Grant is being well cared for at
It's wonderful that they know him so well at
Our guy is getting blood today, to counteract some mild anemia, and also to push more fluid through his kidneys. His kidneys have stopped filtering out the bad chemicals like they're supposed to; that's his major problem right now. It's not life-threatening; it was probably caused by the Vancomycin, he's had this reaction before, they're trying to reverse the damage, he recovered completely last time. I hope he can do the same now -- geez, the last thing he needs is to be a dialysis patient for the rest of his life, along with all the other problems he's likely to have.
He was slightly less of a zombie today than yesterday. Faina got him to do his YES/NO signals -- I think maybe he did them for me, too (it was hard to tell) but probably not with the same enthusiasm he'd show for Faina! (I realize this is an "in" joke. If you're new to this list, Faina is another favorite nurse -- she is extremely cute and vivacious and speaks with a charming Russian accent.) Grant had his eyes open quite a lot this afternoon, but was on the whole pretty unresponsive. That's probably because he feels like crap -- all those bad chemicals coursing around, not getting flushed properly by his kidneys.
He usually perks up a bit after getting blood. We'll see tomorrow.
Love,
Grant Saturday November 17
Dear Friends,
Grant was considerably more alert today! His kidney levels are unchanged and his arms and legs are a little swollen, but he was very much more "with it" today. He says to say hi to you all, and to tell you he still has all his brains.
Tomorrow his former sweetie Sherry Schaefer, is coming to see him. I reminded him about that today, and then later said something to the effect that he'd better get a good rest because he was having a very special visitor tomorrow. He responded with a "full Groucho" -- no less than FOUR eyebrow raises. It cracked me up!
I went to
Massage Guy Tim is going to come next week; Grant's looking forward to that. And the following week Grant's Mom and Dad will visit!
I was very bummed earlier in the week but I feel somewhat better. I am enjoying the fellowship of all
the folks at
Love,
Grant Monday November 19
Dear Friends,
Grant's been very much better the last couple of days. The kidney doc said he's "turned the corner" on the kidney problem, and his kidneys are starting to work again! Grant's also been very awake and, as the nurses say, "appropriate": i.e., his responses make sense. He's been making clear choices among CDs and TV shows, for example. I felt we had a good talk today. I made a "feelings" board so he could tell me how he felt; his first choice was "frustrated"! He also read, all by himself, a letter from his sister Leslie. I didn't give him a quiz after, but I think he really did read it and understand it. Oh, and he's been moving his mouth much better, opening and closing, and moving his head from side to side. He's finally getting back to where he was when we stopped the Ritalin. He should be ready for the eyegaze computer very soon.
Because he is so improved, he may be going back to
Love,
Grant Tuesday November 20
Dear Friends,
Grant is scheduled to go back to Care Meridian tomorrow (Wednesday Nov 21). He was very awake today; he was even nodding for "yes," shaking his head back and forth for "no," and opening his mouth on request.
His kidneys have come roaring back. His creatinine is down 2 points in two days (from 5 to 3) -- definitely a good trend.
I don't know what time they're planning to transport him, so if you're planning to visit tomorrow, you might call ahead to make sure you go to the right place!
Love,
Grant Thursday November 22
Dear Friends,
Grant had a difficult morning. He had a temp of 101-102 and his bed was set to the warmest heating level, so he was extremely uncomfortable until the CNA Nicole noticed the problem with the bed. When I got there, around noon, he was drenched in sweat. Then he fell asleep for the rest of the day. Nobody can explain the fever, or whether it was connected to the hot bed -- I guess we'll see tomorrow if he's more awake, or worse.
I met the new head doctor at Care Meridian today. His name is Dr. Leung and he clearly doesn't know much about the case yet. He's never even seen Grant awake. He certainly had nothing hopeful or positive to say to me! And he wasn't interested in anything I had to say. The Care Meridian staff seems unimpressed with Leung so far. I guess I share their opinion, from this one brief meeting. Leung DID say "God loves you" and "Jesus loves you" about 12 times (no kidding); even chaplains don't do that, in my experience. (The nurses say he talks this way to everyone, including them.) I don't mind people being on God's team, of course, but when DOCTORS invoke the Lord so effusively it makes me wonder if they've given up on earthly remedies. It was depressing and bewildering; I like Dr. Miner a lot better! She was acting director until now and is still Grant's rehab doctor but she won't be handling his general medical stuff anymore.