2003
January 16, 2003
Dear Friends,
For the last four days, Grant has been VERY sleepy. He has been so out of it that Pas even took his temperature a few extra times. He's not hot, but he seems sick. He's been staring into space a lot, with big eyes. You can't get his attention. Or he's asleep with his mouth wide open, and we can hardly wake him up.
He's had periods like this before. We used to be concerned that this sort of change-of-consciousness status, like it was a sign of another "neurological event". But he's always come around after a few days. Something seems odd about this one, though. He seems more confused. When you get his attention, he gives plainly wrong answers to questions, e.g., "Is Pas working today?" "Did you have a bath today?" etc. He's always answered that kind of question correctly before. I haven't been able to get him interested in anything this week. I asked him if I was bugging him and he nodded, so I've been letting him sleep.
His treatments for the UTI involve putting liquid medicine directly into his bladder (via the Foley catheter). It's all they can do, since he's allergic to all the systemic antibiotics. The medicine "creates a hostile environment" for the bacteria in his bladder -- sort of like Listerine, or a boss who's PC-challenged (did you have that training, too?). The nurses are supposed to leave the medicine in his bladder for an hour at a time; they clamp the tube. But this medicine HURTS him a lot; he makes a terrible face. It's hard to watch. They have permission to release the clamp prematurely if it seems to be causing him too much pain, so they mostly do.
Also, he's been wearing a brace 4-5 hours at a time on his right leg to keep it from bending more; they can do this without hurting him (theoretically) because of the botox injections. The brace is very padded, but sometimes it hurts him a lot anyway. They give him pain meds to get him ready to wear it, too, and it still hurts. When they take it off, sometimes you can see it's been pinching his skin -- even though everyone is extremely careful. They keep using the brace because the effects of not using it would cause him even more pain later. If the leg were allowed to just curl up, his hips, etc. would get bent and dislocated as well.
God knows what's he's going through. I'm afraid to insist too strongly that the #1 priority is just freedom from pain, because then he's not a rehab patient anymore, and the insurance might say he shouldn't be at Care Meridian. Everyone there seems to love him so much. They take care of me, too. As far as I'm concerned, he's not leaving there until the aliens come and take him back to his home planet.
Geez, now that I've written this, I see why I've been so bummed the last couple of days. Big waves, little boat.
Love,
Tuesday February 4, 2003
Dear Friends,
I'm sorry I haven't sent an update in a while. Some of you have sent me worried emails. There just isn't a lot to report. Grant seems to have "plateau-ed" -- he's very sharp occasionally but unresponsive the majority of the time.
At least some -- probably most -- of his unresponsiveness is due to his illness. When he has a good day, he responds to everyone, including me. But many days, he's mostly not there for anybody.
I realize I overstate when I talk about him having good "days": it's more like good hours.
We have, of course, considered the possibility that he may be (understandably) acutely, deeply depressed. The doctor has proposed we try to give him as much control over his life as possible -- that we get his explicit consent before initiating any therapy or bath or wheelchair time or TV, etc. Lack of response is to count as "no". As a result of this new policy, he is now allowed to "refuse" (i.e., not say "yes" to) the leg brace.
The doctor has also proposed that we bring in a talk therapist to try to figure out where he is emotionally. I don't expect much from that -- he can't communicate much if he's struggling to stay awake, and we don't want to force another "helper" on him against his will -- but of course I'm willing to let the therapist try.
We are trying to treat him with respect, as if he were an autonomous person with a mind of his own -- because sometimes he IS. But our "respect" seems inappropriate if it only means he's dirtier and more contorted. Nothing seems to be making much of a difference one way or another.
It has been almost two years now, and it seems to me kind of
pointless to drive down to
Also I have almost
killed myself a couple of times falling asleep in the car on the way to/from
The nurses at Care Meridian have also found me a small dog, who is insanely loyal, and pretty entertaining (she is sitting on my lap as I type this). I have named her Fearless FiFi LaFave, because she's so timid. I'm hoping some "nominative determinism" kicks in here, and she becomes her name!
Love,
Thursday February 20, 2003
Dear Friends,
I had a preliminary interview with the psych social worker (SW) last Friday. She wanted to know all about the history of Grant's illness, especially what he was like before. I think she got some background. My first impulse is usually to say "Go to Punkalunka ..." (http://www.punkalunka.org) but there's not much on Punkalunka about how he used to be. Plus, all the doctors I know -- and I know quite a few now -- say they HATE it when patients refer them to web sites. It's hard for me, though, to talk about our background together, what he was like before, how he got sick. The SW has worked with several of the patients at Care Meridian, and has seen Grant from the hallway many times. Interestingly, she had just assumed Grant had had some kind of accident, like Vic and Mr. Tan -- she couldn't believe a virus that looked just like the flu could have done so much damage. We couldn't believe it at first either, of course.
The SW was going to start seeing Grant this week, but I'm not sure if she has yet. I didn't go to Care Meridian today. As of yesterday, she hadn't seen him yet. It will be interesting to see if she can get anything new out of him.
Yesterday he was okay. We went outside for a walk. I have been taking Fearless FiFi whenever I visit Grant lately, because FiFi loves it at Care Meridian, and they all love her and fuss over her. (You may remember they found her first.) The Fearless One scrambles all over the place jumping like a little rabbit. She's still very scared of other dogs, and of course all the neighbors around Care Meridian have dogs, but luckily, all those dogs are behind fences.
Grant's communication with me lately seems to be limited to giving me his number of the day (usually "2" out of 10), nodding that he wants to go out, nodding that he's OK when we're out, and nodding that he wants to go in. And kisses, of course. But he generally doesn't want to do or say about anything else. Maybe I am not trying hard enough. Maybe he's just too tired after going outside. Maybe he's mad at me for not visiting every day. Maybe he's depressed -- or not. I suppose his mental state might be diminished enough and/or his drugs effective enough that he might be relatively happy and content, and I just annoy him with my questions. I hope the social worker can get some answers. If you've visited Grant, you have some idea of the difficulty of her task.
Several people have told me they didn't get the message before this one. If you don't know who FiFi is, you didn't get it. It's posted on Punkalunka.
Oh, Therese had Grant write his name again. He wrote using the mouthstick on a piece of pink paper. Therese made a Valentine's Day card for me. The writing really looks like his signature. That was great, I suppose. I guess I'm jealous he's doing things for Therese and not for me. Pas said he told her HE's jealous of FiFi! The emotional terrain is hard to navigate lately. I can imagine all sorts of scenarios, but with Grant so unresponsive, I don't know if they're anything but my crazed imaginings. I used to be able to practically read Grant's mind; we often said we were becoming the same person. Grant used to say that someday he and I would sit down on the couch together and after a while, an "it" would get up -- a creature with two heads, and four arms and four legs -- we would have become it. I feel like there used to be one person, "Grant-and-Sandy", and now there's Sandy and Grant and the distance between us gets bigger all the time, like in the movies when one of the astronauts starts to float away into space and no one can get him back.
Love,
Friday March 7, 2003
Dear Friends,
Grant is the same. He did finally talk to the social worker on Tuesday this week, and when I asked him if he wanted to talk to her again, he indicated yes. Maybe that will make him feel better. He was a "4" on Wednesday; we walked around outside for about an hour.
He seems interested in the TV series "Six Feet Under", so I got him a DVD of the first season. I like it, too.
Otherwise, not much news. He's been refusing the tub-bath this week. Pas asked me if it would be OK to just bathe him and not ask, because baths are important to help prevent skin breakdown. I didn't know what to say. I'm not sure why he's refusing. They give him extra pain meds in preparation, so I'm not sure the problem is pain. I told Pas to explain to him why he needs to go into the tub. I hesitate to deprive him of the opportunity to make any decision for himself; on the other hand, I don't know if he's competent to make the decision to go without the bath. I think if he really understood the reasons, he'd agree.
He's also been refusing to wear the leg brace for several weeks.
Some of you have asked to see a picture of the Fearless FiFi (who doesn't like to take a bath either). Go here:
http://www.westvalley.edu/ph/fearless_fifi_small.jpg
Love,
April 1, 2003
Dear Friends,
Grant's been away from home two years now. He was taken by ambulance March 31, 2001, and of course has never come home.
The social worker got some interesting information from him, about three weeks ago. He told her very clearly that he was not ready to die, and in fact that he didn't want to be DNR either. So they changed his code status to "full code" (do everything). He even signed the document using the mouthstick.
He indicated to me that when he says he's a "2", he doesn't mean to say he is suffering. He says he is mostly NOT suffering, but that "2" means he's very disconnected and sleepy and out of it.
It was important to learn these things. I feel less burdened, in some ways. If he can stand it, then I can, I suppose. I am very glad he does not experience his life as continuous suffering. I imagine his positive attitude may be entirely the result of all the drugs he's getting; but maybe he's turned into some kind of Zen master in there. I don't know.
Love,
April 28, 2003
Dear Friends,
Dr. Miner had wanted to get a Baclofen (muscle-relaxant) pump implant for Grant, but she decided against that. He has too many potential infection sites. The next idea was to have an orthopedic surgeon do surgery to release the tendons in Grant's hip and knee. At the same time, Dr. Miner wanted the plastic surgeon to close the one remaining wound.
Things are all confused now. Last Friday, the orthopedic surgeon backed out. I haven't found out why. The insurance had approved everything, but since the surgeon backed out, they have to find a new surgeon and start the insurance approval process all over again. Meanwhile, they did their monthly measurements of the wound, and it's significantly smaller. So maybe he won't need surgery for that at all now.
Grant's been pretty good the last few days. Therese has been working with him on puzzles she got from an "improve-your-IQ" book. He's been doing really well, she says. The puzzles are about, e.g., what would this funny-shaped thing look like if you rotated it? Of course this is exactly what Grant and his Adobe graphics pals are really good at. Therese says SHE doesn't know the answers half the time, and has to consult the answer key, but Grant is always right.
Grant is not interested in using the computer at all lately. If he has the surgery, and gets off all the pain meds, then we'll have some idea of his current baseline alertness level, and we'll try the computer again.
Grant's parents were here last week. He and I both enjoyed seeing them.
Love,
May 27, 2003
Dear Friends,
Grant's stable. Things move slowly in the world of the chronically ill.
Grant's had a couple of very good days this month. We were reading an article from New Scientist about a guy with ALS who can't even blink, but has been able to communicate by means of sensors attached directly to his brain. The ALS guy can move a cursor by deliberately bringing mental images to consciousness. It's very slow -- he has to think to induce a chemical change in certain neurons -- but he manages to communicate to an extent that makes him feel his life is worth living. Grant's case is not comparable, unfortunately. The guy in the article cannot even blink voluntarily, but his wakefulness and attention span are completely unaffected by his disease. So he can concentrate and stay on task for hours and hours. Before Grant got sick, he used to have that kind of focus, of course. (Grant once spent a year studying the C. elegans nematode, just for fun.)
But Grant still has interesting reponses. The ALS guy in the article said he definitely felt his life was worth living in spite of his total paralysis and dependency. The ALS guy said that in his current state, when he's happy, he's happier than he ever was as an able-bodied man; and when he's sad, he's sadder than he ever was. I asked Grant if he felt that way, too; Grant nodded.
[ PARENTS: YOU MAY NOT WANT THE KIDS TO READ THE NEXT PARAGRAPH. ]
Grant had another interesting response to an article we were reading about the sexual problems of guys with spinal-cord injury. This article mentioned that orgasm sometimes helps relieve muscle contracture for some guys. Well, as you know, muscle contracture happens to be Grant's biggest problem nowadays; he's getting all twisted up. They've tried every treatment they can think of, from massage to electronic stimulation to several sets of custom-made and very expensive splints, and nothing has worked. His muscles are so tight they constantly hurt him, and that's the main reason he's still on heavy pain-killers. (Surgery is now planned.) Since Grant's been sick, he hasn't had any sexual experience of any kind (that I know of). I always figured that was just out of the question. One of the first manifestations of his illness was urinary incontinence, and he's had a Foley catheter in place ever since. It never occurrred to me that I might ask that the Foley be removed for recreational purposes. But as we were reading about the possible therapeutic value of orgasm (Grant seemed very awake for this, BTW), I naturally asked him if he'd like to try that, and he gave a big nod. So I ran it by the doctor, and she OK'd it, too. They change his Foley at least once a month, and we all agreed we'd do some experimentation, if Grant is up for it (Lordy!), the next time they change the Foley.
I hope that's something for him to look forward to.
Love,
June 16, 2003
Dear Friends,
Today is Grant's third birthday in the hospital.
Grant hasn't been able to get up in the wheelchair or the bath
for several weeks now. He has a shearing
injury on his butt. There's always
danger of that when he's moved. One of his previous surgical flaps opened up
about an inch, and it's healing, but very slowly. He won't be able to get up until July 1, at
the earliest. It's too bad, because we've
had some wonderful June days this month --
A friend of mine from grad school (Karen Allen) sent me a
copy of The Diving
(BTW, I have noticed that Therese is now using Martin's alphabet-grid system with other patients. Maybe it will become a new OT standard.)
As I read Bauby's book to Grant, I can often ask Grant to compare his experiences and feelings to Bauby's. For example, Bauby writes about realizing that he will be wheelchair-bound forever; having to endure an occasional inexperienced or incompetent caregiver; going outdoors in the chair; seeing himself in the mirror for the first time after his stroke; smelling himself; hospital routine, etc. Bauby was comatose for several weeks, and remembers having extended vivid dreams during that time. Grant says he does not remember anything about his comatose time. Like Grant, Bauby received many cards and letters of support and concern, and after a time he began to compose a monthly letter to all his friends. I asked Grant if he would like to do that. To my surprise, he indicated no. Why? He nodded when I asked if such a task would be too difficult for him because he can't stay awake and on task long enough.
We are still trying to arrange for Grant to have tendon-release surgery to relieve his muscle contracture. Finding an ortho surgeon is turning out to be pretty difficult, because Grant has had so many bad antibiotic reactions. Every surgeon consulted so far has turned him down. I gather that the surgery itself is pretty routine, but the surgeons are worried Grant will develop an untreatable infection, go septic and die, and they'll get sued. Grant has indicated that he understands the risks and wants the surgery anyway, but his desire and consent are apparently irrelevant. Does anyone know a good orthopedic surgeon who is affiliated with an Aetna-contracted hospital?
Fifi is going to be a therapy dog for a new patient at Care
Grant is supposed to finally get a roommate any day now. The Care Meridian addition is almost complete (three new patient rooms). I think they're gearing up for full occupancy. Lots of new staff.
I'm not sure Grant will be awake enough today to enjoy his birthday (he's been pretty out of it the last couple of days) -- but that probably won't stop the Betty the Activities Director from having a little celebration!
Love,
July 8, 2003
Dear Friends,
Grant is still not allowed to get in his wheelchair or go in the hydro. It's been over six weeks! The new shearing wound is getting better, but there are now three more new wounds. He probably won't be able to go outside again until fall.
The new wounds are stage 2 (on a scale of 4 or 5). They're not
nearly as awful as the ones he had before, and they will heal in a few weeks
with good care. I'm not worried about
him getting good care; the people at Care Meridian are very conscientious. The
wounds happened because his fancy "wound-preventing" bed -- which
costs more than $100 a day to rent -- had actually been broken for weeks. ARGH! A couple of months ago, I noticed the
bed had a broken side rail, and Pas mentioned that it also did not seem to be
puffing up like it was supposed to. The Care Meridian folks are very good about
getting equipment fixed as quickly as possible, so they had a representative
from the bed company (Hill-Rom) there within a day. The Hill-Rom company rep fixed the side rail,
but said there was nothing wrong with the puffing; he said Grant's a big guy,
so of course the bed won't puff under all that weight. But then Grant got the shearing wound, which
meant that things were stickier, not as dry they should have been, i.e., not as
much air circulating down there. So Care
You may also recall that we were going to attempt to try to let Grant have a sort of therapeutic sexual experience about six weeks ago. Well, that revealed a new issue. Grant's Foley was removed, but afterwards, nobody was able to reinsert it. So Grant was in diapers for a few weeks! That did not help the wound situation on his butt, and combined with the broken bed, probably contributed to the three new wounds. As an alternative to the diapers, they started using a condom catheter, but that's not a long-term solution, because of chafing and thus more potential skin breakdown issues in an even more sensitive site. About two weeks ago Grant was finally taken by ambulance to a urologist's office, but even the urologist couldn't insert the Foley. The specialist recommended that Grant be admitted for a urologic workup. Grant has been peeing fine (they say he "has good output"), so nothing on the urologic front so far constitutes a medical emergency. He has an appointment at Stanford for August 4. I gather he is going to be admitted for tests to try to figure out what's causing the Foley insertion problems; they suspect it's a prostate swelling thing, which may not be serious, but has to be checked out.
Dr. Miner is smart and tenacious. She is still working on a surgical solution to Grant's leg contracture. She says that the docs agree that his hip is probably now dislocated, so the surgery he needs is no longer a simple tendon release, but rather something more complicated, requiring 2-3 weeks hospitalization. She would like to schedule the orthopedic surgery for when he is at Stanford for the urology workup, and she believes she may have found a surgeon. Grant indicates that he still wants the surgery, but that he is scared of the idea of being at a totally new hospital where the staff doesn't know him. I plan to be with him as much as I can, of course, but it would be nice to have some backup at Stanford, so he feels as secure as possible. I still don't know for sure what the plan is -- I haven't heard that the surgeon has definitely signed on -- but I gather he'll be at Stanford at least one night, and possibly as long as a month. I'll keep you posted.
Grant's been getting physical therapy again, in the form of electrical stimulation of his butt to promote wound healing. (The transport by ambulance to Stanford will not be good for his wounds.)
Grant has been listening to the latest Harry Potter book also. He is really interested -- sometimes he wants two CD's in one day. I am enjoying it very much also.
Love,
Sunday July 20, 2003
Dear Friends,
It's been an eventful week for Grant.
He finally got a roommate on Thursday this week. The new guy in his room had been in a room across the hall for several weeks. I had never noticed him much; he was usually asleep and never left the room, and wasn't interested in FiFi. Grant was not happy when he got moved in, but I thought that if Grant had to share the room, this guy would be the perfect roommate: extremely quiet, didn't even have a TV, or any visitors that I saw, and never even seemed to open his eyes. Today when I went to visit, the roommate was gone -- totally gone. It turns out he was quiet because he was dying. Grant had figured that out. This whole roommate incident happened so fast that we didn't have a chance to become attached to the guy or meet his family or anything.
Some good things are happening, Grant's been very alert. His third original bedsore is almost completely healed, and his new ones are starting to respond to treatment. He finished listening to the latest Harry Potter book. Speech therapy got Grant to "vocalize" this week (I'm not sure what that means). He was doing new mouth movements, and making the kissing sound consistently. Speech therapy is going to try to use the Passy-Muir valve again. They discontinued that about a year ago because they were worried about Grant's breathing, but he's been so stable I guess they think they can risk it again.
Something worrisome is afoot, though: in the last day or so he has begun to have trouble peeing. His output is down and he is uncomfortable. This situation is usually handled by irrigating his bladder via the Foley, but because nobody can insert a Foley now, the nurses can't do much except massage his tummy. He has a urology appointment at Stanford Aug 4. They are trying to get his Stanford appointment moved up, but no luck so far. The doctor will be in Monday or Tuesday and if things don't improve, I wouldn't be surprised if he has to go to hospital for an emergency procedure.
Also, we are bummed because his favorite nurse Pas (an LVN)
is quitting to go back to school to get her RN.
Pas has made my life much easier these past 22 months. She's one of those nurses (like Jeri and
Faina and Jane at
Love, Sandy
Tuesday July 29, 2003
Dear Friends,
Wonderful things happened today. Maybe you should have a seat.
When I got to Care Meridian in the afternoon, Betty had the aromatherapy going. She hasn't done that in a very long time. I couldn't smell anything different. Grant is a scientist, as you know, and a longtime subscriber to the Skeptical Inquirer. You can imagine what he thinks of aromatherapy. I asked him what he thought. He just shook his head. I asked him, in my best Scottish accent, if he thought aromatherapy was CRAP ("If it's not Scottish, it's CRAP!") He nodded. I thought his nod was so funny I went and told Pas about it.
Therese came in after a while and told me, very excited, that he had mouthed words perfectly this morning.
Now, it's been clear for several weeks that something is changing with his mouth movements. All of a sudden, he's got a lot more control. I have been noticing that he's started to not only make the kissing face consistently, but also the sweet little smacking sound. He could not do that before. So I said I wanted to see today's new trick. I asked, "Grant, what do think of aromatherapy?" He mouthed, "CRAP". Perfectly!
I was delighted, and he seemed very awake, so I asked him to mouth some more words: his name, my name, Pas's name. Then I brought Pas into the room, and he did it for her. We also asked him again what he thought of aromatherapy ("crap"). We were giddy laughing and told him we were proud of him. Therese was all excited about ways to take advantage of this new skill.
Things calmed down, then, and Grant and I listened to a book on tape for awhile, and I did some range of motion on his hands. His hands had been in the splints and he had clearly indicated that his hands were hurting him. I unbent his fingers, and put his right hand around mine. We've done this many times. It's a good natural stretch for him. I asked him if it hurt (it does sometimes). He shook his head no.
You may recall that while he's had a lot of spontaneous uncontrolled
leg movement, he hasn't had any movement at all in his arms for over two
years. I remember at
Since he seemed so bright today, and his hand was already around mine, I asked him to squeeze my hand. I also haven't asked him to do this in at least a year. To my great astonishment, he squeezed back. I didn't believe it at first. It became obvious that he was really doing it, however. He squeezed my hand, and then I went and got Pas and he squeezed HER hand, and amazed, we ran and got Therese and he squeezed HER hand, and then we got Paula (the Director of Nursing) and he did it to her too.
This was not supposed to be happening.
Then we tried the OTHER hand. You know that with brain injury, sometimes one side comes back but not the other. He squeezed with his left hand too! We asked Grant if he was surprised. He nodded yes.
We were all practically jumping up and down with excitement.
By this time, figuring we had nothing to lose, I asked Grant if he could do any other new stuff. "Can you raise your right arm?"
HE DID IT. He raised it about three inches off the bed. We all gasped. His WHOLE ARM. He did it consistently, over and over, whenever we requested!
It's like a fuse got replaced and now the power has come back to a whole area.
I don't know what's going on, but everyone agrees this is amazing. (Several people used the word "miracle".) I left a note for Dr. Miner. Since he's going to Stanford anyway Monday, I suggested maybe they should do a neuro workup. He hasn't had a brain scan in two years. It's interesting that he should be getting better movement starting from his head and moving DOWN to his arms -- we had given up on his arms. In Guillien-Barre syndrome, the paralysis starts at the legs (he first had trouble walking) and moves UP, then, after some time, the paralysis goes away in the opposite direction (DOWN). Naturally, I'm no expert, and I have no idea if Guillien-Barre ever lasts two years. I don't even necessarily expect he'll be able to do any of this tomorrow. But clearly something wonderful happened today.
I recently watched the Kenneth Branagh film of Henry V and now I can't get out of my head that hymn they sing after they win the battle -- "non nobis, Domine, sed nomine tuo da gloriam" (roughly, "don't give the glory to us but rather to God's name"). That's not the language Grant or I would use, but I don't know what words to hang on this. God, nature, whatever. It's the music anyway -- the words are just along for the ride.
Love, Sandy
Monday August 4, 2003
Dear Friends,
Thanks so much for all your messages of encouragement.
Grant has been pretty consistently doing the hand squeezes since last Tuesday. He hasn't raised his arm again, but that may be muscle weakness. We've since discovered he can also move his shoulders up and down, and move his thumbs independently of his hand. This is all good. It means, at minimum, he might be able to operate a regular hospital call bell or make the "thumbs-up" sign. He has been a lot sleepier for the past few days so we haven't seen much mouthing of words.
I went to
It looked to me like this doc thought this was going to be just
routine insertion of a Foley. He didn't
reckon on the contracture -- one big thigh right over the relevant area -- or the
antibiotic intolerance. He finally said he'd
have to consult further with Dr. Miner, and he sent us back to
The good news is that Grant's skin seems okay in spite of the ambulance ride, and he was very oriented. He squeezed my hand and gave me lots of kisses, and when I asked him "Grant, do you know where you are?", he mouthed "STANFORD". The trip took a lot out of him, could have been dangerous for his skin, and the ambulance alone probably cost thousands of dollars, so I sure hope something comes of it. The Stanford doc did seem sympathetic and willing to help, anyway, so there may be another trip to Stanford in Grant's future if Dr. Miner and this guy can figure out a strategy. They're talking about something called a super-pubic catheter (!).
Love, Sandy
Friday August 15, 2003
Dear Friends,
It looks like the catheter situation is getting resolved. The Stanford guy and Dr. Miner finally connected, and so Grant's going to have surgery at Stanford on the 19th to figure out why the Foley catheter won't go in (there may be some kind of obstruction). The plan is to put in a supra-pubic catheter also.
Grant had to go up to Stanford yesterday for a couple of pre-op appointments: one at the urology clinic and one at the anesthesia clinic. The appointments were more or less back to back, so the EMTs from the ambulance company waited around for him, and helped move him between clinics. It's amazing how many heads turned when Grant was wheeled into the clinic waiting areas with his entourage (the two EMTs and Pas and me). Grant was sitting high up in the gurney -- his head was about at my eye level -- and he had his eyes open looking down at all the people in chairs, and he looks kind of like God anyway -- God in a gurney. I did not realize that someone like Grant gets special treatment. In both clinics he was whisked into a private room out of sight and got immediate attention. I wonder why. Do the people in the chairs get upset when they see people like Grant? Grant of all people could wait his turn; he doesn't have a Palm Pilot full of things to do (unlike most of the people in waiting in chairs).
I was very favorably impressed with Stanford yesterday. Everybody was up to speed about Grant and extremely nice.
Dr. Miner hopes to get an ortho evaluation for Grant while he is in Stanford. He is scheduled to stay there only 23 hours after the surgery (it's a pretty minor procedure). But if the ortho doc wants to go ahead with the tendon release, Grant will end up staying at Stanford quite a bit longer, maybe a couple of weeks. We still don't know.
Grant is still squeezing my hand and moving his thumbs, etc. although he has been mostly pretty out of it this week.
Also, Grant's wounds are healing nicely. So we have to be very careful about his skin
when he's away from Care
It's great that something is finally being done.
Love, Sandy
Wednesday August 20, 2003
Dear Friends,
We have been having a wild old time the last couple of days.
Grant's surgery was scheduled for 9:15 AM on Tuesday, so he had
to be transported from
We have all been very concerned about Grant's skin in the gurney. His ride to Stanford was scheduled for 6:15
AM Tuesday. I did not go to
Therese had gone to a lot of trouble to get Grant a special cushion
to protect his butt on the gurney during transport. We ended up borrowing this
cushion from National Seating and Mobility on Bascom in
So when he got to Stanford and I noticed that he didn't have his cushion, I immediately became concerned that he be removed from the gurney as soon as possible, put into a bed and repositioned.
Well, pre-op patients don't get put in beds. He was just moved to a fancier gurney and repositioned. Then the real waiting began. About four hours later he was finally wheeled into surgery. The EMTs had left, of course, so I bugged the pre-op staff to turn him again after a couple of hours. They were very nice about it, of course, but it clearly wouldn't have occurred to them if I hadn't been there. So I was glad I was there.
Another reason I was glad to be there was that I was on a mission to get Grant a Clinitron bed for after the surgery. We had been trying unsuccessfully to arrange that since last Thursday at his pre-op appointments. The doc has to order the special bed, but I did not find this out until later. I had called the Stanford urologist's office on Friday morning. He has two secretaries: the Nice One and the Mean One. The Mean One had called Pas "retarded" because she had called to reconfirm his pre-op appointments. When I called on Friday morning, I got the Mean One also. She treated the request for the Clinitron bed as if Grant was some wussy weirdo who just wanted the nicest possible bed -- as if he were the Princess in the Princess and the Pea. She utterly failed to comprehend that the issue was his skin. I thought I had explained that to her (I am tediously THOROUGH, as I am sure you've realized), but I did not succeed in getting that across.
I got the run-around all day Friday: the Mean One said I had to talk to the ambulatory post-op unit, the ambulatory post-op unit said they didn't take quads and we had to get him admitted to a regular unit, the regular unit people said to consult "Rooming", Rooming said go back and get an order from the doctor, and finally I was bounced back to the Mean One. The Care Meridian people got the same run-around on Monday, and so when we arrived on Tuesday morning, there still wasn't an order. I went into "broken record" mode (young people, sorry for the obscure reference -- look it up), explaining about the need for the special bed all over again to everyone I encountered: receptionists, orderlies, CNAs, nurses, random passers-by. Everyone was very nice and agreed, yes, we did have a problem, but the doctor would take care of it when he came by before surgery "in about 20 minutes". (I realized after awhile that this was the standard response.) After waiting in pre-op for a couple of hours and no doctor had appeared, I started to get pathetic and cry. I have often cried in the hospital, and usually someone calls a chaplain or a counselor of some kind, but those people can often make things happen when no one else can. I didn't get much sleep the previous night, and I was very stressed out after the missing cushion incident. The pre-op nurse finally got a hold of the doc and got the order for the bed, which of course did not actually arrive until the afternoon. But at least now we had it, and there would be less danger of new bedsores even if they forgot to turn him.
The surgery went "uneventfully", and he was in recovery for a couple of hours. He was not moved to a room until about 3:30 PM. I was not allowed to be with him in recovery, and as the hours passed, I became more and more concerned that he was lying around anesthetized, in one position, needing to be turned, and being ignored. (That's the problem, of course; he is very easy to ignore.) So I began bugging people to check on him and make sure he was turned. The first answer I got was that the post-op people were "aware of his condition". This did not seem a satisfactory answer to me, so I bugged them again asking for specific information about the last time he was turned. By this time, I was probably making a nuisance of myself, but God, it was so frustrating!
When he finally emerged from recovery, in the Clinitron bed (YAY!), we went down to the ward, and began the next phase of the insanity. The nurses on the ward were very nice and competent, but seemed to be completely unfamiliar with his case. They did the really necessary stuff (push fluids, turn him), but didn't know his meds, or indeed, what to do with him at all. He of course hadn't eaten for 20 hours, and comically, someone had written in his file that he was to have a "regular" diet, so after an hour or so in the room, they brought him a nice chicken dinner. (Of course he has not eaten real food since April 1, 2001.)
The medication orders were faxed from Care Meridian (for the
third or fourth time), and they finally got him more or less settled. The Stanford dietician did not agree with
Care Meridian's nutrition plan, so he's been getting somewhat less food, but I
am not concerned about that as long as he goes back to
Wednesday morning, however, he had a fever, so they did labs
and decided to keep him another day at Stanford. I was very worried when they told me on the
phone that he had a fever, but once I saw him, I knew he wasn't sick
(yet). He looked great, and was very
alert all day Wednesday. His fever was
not high (100-101), could have been due to anything, and went away by
midday. So I am hoping he will be able
to go back to Care
Love, Sandy
Sunday August 24, 2003
Dear Friends,
Grant did go back to Care Meridian on Thursday, and he has been pretty sleepy since then. But he is still moving his hands and fingers and shoulders, etc., and he hasn't had any fever.
The Stanford people decided not to do any ortho stuff there last week. I don't know if anyone even examined him -- I asked Grant if the ortho surgeon had been in to see him, and Grant indicated "no" (but he is not always reliable).
The plan now is perhaps to have the surgery done at Valley Med
in
One of the other CM patients recently had ortho surgery at
Love, Sandy
Tuesday September 9, 2003
Dear Friends,
I am sorry about the aborted message earlier today. I clicked on "Send" by mistake.
Some people didn't get the the messages of August 20 and 24
because of net chaos caused by the sobig virus. The Aug 20 message is the
harrowing account of our adventures on surgery day at
If you missed any, they're accessible from http://www.punkalunka.org (click on "latest updates").
Plans are going forward for the ortho surgery at VMC. We are hoping the surgery will enable him to get off all the heavy-duty painkillers and muscle relaxants he's been on for almost a year now. I would love to see his general alertness level improve!
He does still need the drugs, though. Yesterday, there was a delay in the pharmacy delivery, and his painkillers didn't arrive until the afternoon. They gave him Tylenol instead, but that didn't work very well. He said he was having pain at level "9" out of "10". Luckily, the drugs arrived within minutes of the time he asked for them.
He is still able to squeeze my hand and move his wrists and thumbs. He has been listening to a Marcia Muller novel on tape.
The ortho surgery won't happen until after his follow-up appointment Oct 3 at Stanford. It's actually going to be three different ortho procedures, because there are three major bends (hip, knee, and ankle). I don't know how long the hospitalization will be, but I am told this surgery is relatively minor. He hasn't been able to get up in the chair since May, so I am hoping that they will order him up after the surgery. He hasn't even seen my new car yet, and I bought it in June (a Jetta diesel wagon).
His wounds are in very good shape; they are all almost completely healed. Pas says she can barely pack a 2-by-2 into the really persistent one anymore. So I guess that was a bright side to him not being able to get up for so long -- no extra irritation from the transfers to/from bed and wheelchair. With no wounds, he will be able to sit in his chair a lot longer after the surgery.
He is looking wonderful as ever, and I hear he's coming around into an awake period, so I'm going to go see him right now!
Love, Sandy H: 408-252-1135 W: 408-741-2549
Grant is at: Care Meridian 11500 Center Ave.
Wednesday September 24, 2003
Dear Friends,
Grant finally has an appointment at Valley Medical for an evaluation for orthopedic surgery. It would be wonderful if we could finally get him off all the muscle relaxants and pain killers so we could see how awake he can be without them.
He has been depressingly uncommunicative for about a
week. He doesn't respond at all most of
the time. He was starting to listen to a
new book on tape, but now seems to have lost interest. He doesn't want to listen
to music or even watch TV. He just stares into space with big eyes. He doesn't
look at me. He has been running a
low-grade fever in the mornings, so he may have some kind of bug, although it
has been very hot in
He squeezed my hand once yesterday and still makes his sweet kissy face occasionally, so I know he's in there.
His insurance situation is changing.
No SNF is nearly as nice as Care Meridian, of course, and they take wonderful care of him there, and we could afford to pay out of pocket for some time, thanks to Adobe stock and long-term disability payments. And given his medically fragile condition -- his MD recently downgraded his prognosis from "Poor" to "Terminal/Poor" -- that might be all he'll need.
I have to add that everyone in Adobe HR and Aetna is being
extremely NICE about this transition thing, and given the way health care works
in this country, I'm pretty sure Grant and I have been extremely lucky, and
that
I'm sorry if all these calculations make your head spin. It's taken me a long time to understand it all, too. Don't get me started on the American health care system. You need more than a Ph.D. to understand it. And you need high doses of Prozac to bear it, even in a best-case scenario like this one.
Love, Sandy H: 408-252-1135 W: 408-741-2549
Grant is at: Care Meridian 11500 Center Ave.
October 4, 2003
I'm writing this on Saturday the 4th, describing events of Friday the 3rd.
Dear Friends,
Grant has experienced some "medical misadventures" in the two and a half years of his illness -- G-tubes and central lines spontaneously "popping out" for no reason anyone can recall, essential tubes left unconnected (remember the incident of the unconnected colostomy tube that resulted in the volcano of poop?). The massive decubitus ulcers were the most egregious example of "things that should not have happened". I have never filed any kind of formal complaint against any medical person for any of these things, since it always seemed to me that given the number of staff and the relative seriousness of other patients' demands, it was only right that other patients' needs came first. The doctors and nurses, especially in the ICU, were juggling multiple serious problems at once. It made me feel better that they always acknowledged that something had gone wrong, and were genuinely regretful. So, as I said, I never filed any kind of formal complaint against anyone -- until yesterday.
Yesterday we had what was supposed to be Grant's 6-week
post-op appointment with the urologist at Stanford. I thought I was prepared this time. I had gone to National Seating and Mobility
myself and got the special cushion for the transport. I made a special call to
Care Meridian to remind them not to forget to use it. I had all the paperwork.
Care
I don't know if I mentioned this before or not, but since his suprapubic catheter insertion, Grant's peeing needs have been met by two urinary catheters: the suprapubic AND the Foley. The idea was to remove the Foley eventually. At yesterday's appointment, the urologist was supposed to disconnect the Foley catheter and change the tube on the suprapubic catheter. Again, everyone at Care Meridian had told me there was some urgency about changing the suprapubic tube, since the rigid tubing from the surgery was physically being moved and irritated by his contracture spasms. Also, I was told to be sure the new suprapubic tube was not only less rigid but larger in diameter, since once the Foley was disconnected, the small rigid tube would be insufficient to handle the flow and there would be leakage from his penis, which we wanted to prevent, since he has some new (this week) decubitus wounds on his butt, and of course you don't want the wounds to sit in puddles of pee. I'm sorry this is so complicated -- welcome to my world.
When the urologist came in to see Grant, he seemed to be a in a huge hurry, and did not even look at the surgical site. One of the EMT's was in the room with me, so I was not the only person to witness this omission. The EMT also commented on it, unprompted. We are quite certain the urologist didn't look because Grant's big thigh was laying right across the site, and there's no way anyone without X-ray vision could see through his leg. At Care Meridian, two extra people are generally required in any examination just to hold Grant's leg up (this also causes Grant a great deal of pain). The urologist did not even attempt to move Grant's leg. He asked me brusquely how things were going, and I said things were okay (thinking that we were on the same page regarding what was to happen today). He said fine, come back in two weeks (!!) because we have to wait six weeks from the date of surgery to change the suprapubic. Changing the suprapubic would require an hour of his time, he said, and he'd need an assistant, and he was obviously far too busy to do the job today!
He seemed completely unaware that it had ALREADY BEEN six weeks, that this was the appointment time his office had given us.
When I asked what exactly was the point of this visit, he
said, with obvious impatience, well, he would remove the Foley "if you
want to" but there "might be leakage" from the penis, in which
case the Foley would have to be reinserted anyway. He obviously wanted me to conclude that we
should just go back to
I said we'd have to talk to Grant about what to do next. Grant was not particularly responsive (he in fact was getting more and more sick). The doctor said he did not have time to wait for Grant's answer, and said he'd be back later.
While we waited for the urologist to return, I called Care
Going back to
As I was walking out of Stanford, I noticed a sign for "Community/Customer Relations/Chaplaincy Office"(!). (Maybe Stanford thinks they can appease customer dissatisfaction by the deepest ultimate-big-picture Customer Service response: "It's God's will".) At any rate, without doing my usual ratiocination and second-guessing, I went in straightaway and complained to the higher powers.
This is not the end of the story. When Grant arrived back at Care
Something troubling is going on with this fever, of course. Grant has had low grade fever continuously for over a week now, and no one knows why.
Stay tuned for more of Grant and
Love, Sandy
Monday October 13, 2003
Dear Friends,
Thanks for all your messages of support. I sent a copy of the last email to the Stanford Community Relations people, so they would have something in writing from me. I believe we won't have to deal with the Stanford urologist anymore, since the procedure he was supposed to do can (I am told) be done by any competent urologist-surgeon.
Grant has been much better the last few days: no fever, no vomiting, and more alert. Nobody knows what the fever was about; they speculate a viral infection or anemia.
Last Monday (October 6), we spent the day at Valley Medical Center (VMC). I believe Valley Med is the counterpart of "County General" on ER: it's the place that treats everyone regardless of ability to pay. They don't charge for parking, either. (Did I mention that Customer Relations at Stanford gave me a free parking pass as a parting gift?)
Valley Med is at the corner of Moorpark and Bascom in SJ. It
comprises several buildings, and I had never been inside any of them. It looks pretty shabby from the street, but
there's obviously been a lot of recent construction, and it's surprisingly nice
on the "campus" (it's like
The orthopedic surgeon is a pal of Dr. Miner and so knew something in advance about Grant. He was very nice, and is willing to do at least some surgery on Grant to relieve the leg contracture. He is willing to straighten Grant's right leg. Grant's hip is a separate issue. No one knows at this point what's going on with the hip -- it's clearly bending, but the bone might not even be attached to the socket anymore, and re-connecting that would be a major job, requiring a big incision right near his large right hip decubitus (which has mostly healed). Because Grant's leg has been so bent for so long, they have not been able to do an adequate x-ray. SO the first step will be to straighten the leg, and then once they have a clear view, do an x-ray. Everyone seems to agree that hip surgery might not ever be advisable, given that he has already re-grown a whole lot of tissue in that area once, and the surgery would be cutting right into all the new tissue. But if his hip is not also fixed, his whole (straightened) leg will turn in. I don't know whether that's a big deal or not. It's not like anyone forsees him ever walking again, so there's not a lot of concern about permanent loss of function. We're basically interested in straightening his leg so he can be out of pain, sit in his wheelchair without danger, receive adequate hygienic care in the perineal area, and avoid skin breakdown between his thighs.
The upshot is that he may have the ortho surgery as early as tomorrow (Oct 14), if they can fit him in. We did all the pre-op stuff at VMC last week, so he's good to go whenever they can take him. Right now it's about 1:30 PM Monday, and I still haven't heard anything definite about tomorrow. If it doesn't happen tomorrow, it will happen within a week or so. And before they take him out of the OR, while his leg is straight, the plan is for a urologist to come in and change the suprapubic catheter, which ought to be pretty straightforward since the area will finally be accessible.
He's supposed to remain in the hospital for only a couple of days. I am a little concerned because I mentioned that he needed a Clinitron bed, and the nurse said, "Oh, I think we may have one of those." (MAY HAVE??? ONE???) They seemed to understand the situation, though. Several people told me no one could do anything about getting the bed until after the surgery, when the doctor issues the post-op orders (that would be one of the orders).
All in all, we had a pretty good experience at VMC last week. We didn't intend to be there all day, so I was responsible for his hour-by-hour nursing care: oxygen, fever control (ice packs), hydration (at Care Meridian, he gets water almost continuously 24/7), colostomy care. When I say I was responsible, I don't mean I DID any of that stuff. I never have, though I've often seen it done. I did not feel competent to do those tasks for the first time in a strange hospital without supervision. I ended up bugging people to do the care for him. He essentially got lots of acute care even though he was only there on an outpatient visit. So at the end of the day, VMC called Care Meridian, and basically said, "Don't send this guy back here without his own nurse." (I imagine they might also have said, "... or teach the wife.")
I would like to learn, too. It turns out that a family member can do just about anything to a patient without liability -- whereas only a licensed nurse can do a simple thing like give water. (This is because with someone like Grant, if you put water down the G-tube without first checking stomach contents, and his stomach happens to be full -- i.e., there's a lot of "residual" -- you can cause him to vomit, and vomiting by itself is pretty dangerous since he can't voluntarily cough or swallow.)
Grant's parents will be visiting this week (YAY!), and he is looking forward to seeing them.
Love, Sandy
Sunday October 19, 2003
Dear Friends,
Did I mention that Grant did this extremely cute eyeroll-plus-big-eyes when I told him who our new governor is? Sometimes it's really clear he's all there.
It's been a pretty good week. On Tuesday he had the surgery on his leg at VMC. They also changed the suprapubic catheter. The orthopedic surgeon said it was very difficult to straighten his leg, and they did the best they could, but he wasn't sure it would be entirely satisfactory. He said they simply could not bend and turn his leg as much as he would have liked. So it's still fairly bent. But it's very much better. They did an x-ray and it turns out his hip is not dislocated, so that's good.
The surgeon said that they could have done a much better job "if we hadn't waited so long"! The waiting, as you may recall, was entirely due to the fact that we first had to ask every orthopedic surgeon in his insurance network, and by the time they had all turned him down, many months had passed.
Grant was very alert in the hospital. He seemed to know exactly what was happening, and was able to communicate efficiently enough with the nurses, particularly about his pain. After the surgery they put him in the surgical ICU, and they discharged him the next day. Putting him in the ICU was an excellent idea -- I don't know whose idea it was -- but he seemed to be getting one-on-one care, so everything in his rather complicated care regimen was done! They even got a Clinitron bed without too much trouble, though the bed was a different model than the one he has at Care Meridian. This bed had the bubbly stuff from head to toe; it looked rather like a bathtub full of bubble bath. The bed didn't have any mechanism to elevate the patient's head and chest; there were some big foam bolsters, but it took at least three people to place them, so Grant ended up lying flat for several hours -- not the best thing for him. He needs to have his upper body somewhat elevated for his "pulmonary toilet" (one of my all-time favorite hospital expressions).
I was talking to him in the ICU after the surgery, and I told him he was so brave, and, interestingly, he shook his head "no". He hardly ever signals disagreement. I asked him, "You don't think you're brave?" and he shook his head again.
His Mom and Dad are here, and they have never really seen him in his alert mode, so his responsiveness is kind of a surprise. Grant squeezed his Mom's hand, and nodded and shook his head at appropriate times as she talked to him. If you have never seen him like this, it is really a treat. It doesn't happen often or predictably, but it does still happen.
Dr. Miner is ordering more intensive physical therapy. He is in bed now with a big foam wedge between his legs to keep them apart. She now wants to do the Baclofen (muscle-relaxant) implant on him. She was thinking about doing that a year ago. It looked like a promising therapy. We watched a video about it, and apparently it has changed the lives of many patients. But she decided there was too much risk of infection then because of his wounds. Now, however, the wounds are so much better that she is willing to try it. So he will be going to Los Gatos Community for that sometime when all the approvals and paperwork and scheduling get done.
Meanwhile, I got a call from Customer Relations at Stanford apologizing for the mess at the urologist's office Oct 3. The Customer Relations person wanted to know if there was "anything they could do" -- what does that mean? Is that code for something? I think I will ask them to pick up the ambulance co-pay. I suppose it won't hurt to ask.
Love, Sandy
Sunday October 26, 2003
Dear Friends,
One set of Grant's stitches from his surgery Oct 14 have come out, so he is going back to VMC tomorrow to get sewn up again. They tell me this is not a big deal, but the incision is leaking blood and fluid, which is making Grant's anemia worse. He has been very out of it all week. He looks pale, and doesn't seem to have the energy to move his eyebrows up and down, let alone nod.
Love, Sandy
Saturday November 1, 2003
Dear Friends,
Grant did go to VMC on Monday. The docs looked at the place where the stitches came out, but decided not to do anything. They said the site looked really clean and appeared to be healing nicely, so they didn't want to mess with it. They said re-stitching it would be more dangerous than leaving it alone at this point. I overheard the docs talking among themselves, and they were marvelling at the quality of care Grant's getting at Care Meridian. They said, among other things, "There's a great rehab doctor down there." That would be Dr. Miner, of course. They told Miguel (the Care Meridian nurse who accompanied Grant on Monday) he was doing a great job and just to keep on doing what he's doing.
Dr. Miner saw Grant on Thursday, and managed to move his leg more than anyone thought possible. She ordered that he get up in the chair every day now! Only a half hour a day, but still, it's a nice change. Yesterday I went outside with him, and he finally got to see a beautiful day, breathe some nice cold air, and see hummingbirds and the new car I bought in June.
The folks at CM have a new plan to get the residents out of
the facility for little day trips as often as they like. For example, Floyd and
Victor are looking forward to going to the big mall in
I will be going to NY (via
Love, Sandy
Friday November 7, 2003
Dear Friends,
When I arrived at Care Meridian on Monday (Nov 3), I was greeted with good news: Grant is having the Baclofen trial on Monday November 10. An appointment opened up much earlier than anyone expected.
The Baclofen treatment itself consists of a pump that continuously supplies the drug (an anti-spasmodic). The pump is surgically implanted in the patient's body, near the base of the spine. There's also some kind of external reservoir for the drug, and every month the care-givers just refill the reservoir with the drug.
The treatment, when it works, can be extremely effective in controlling spasticity. However, it doesn't work for everyone. So, standard procedure is to do a trial injection of a dose of Baclofen directly in the spine. From the trial injection, they can tell within a day or so if the Baclofen is a good solution for the patient. They go on to do the implant surgery only if the trial is successful. It is this trial injection Grant is having Monday.
I am delaying my trip to see my Mom until next weekend, so I
can go with Grant Monday. The trial will
be at Los Gatos Community
This week Grant has been getting up every day. His new wounds are healing nicely. He had a spectacularly awake day
Wednesday. Care
Love, Sandy
Saturday November 22, 2003
Dear Friends,
Grant had the Baclofen trial November 10; it went well. The
drug seems to work for him. He spent the whole day at
When I got home Monday night, there was a crisp letter in
the mail from ProBusiness, the COBRA administrator for Adobe, saying Grant's
I did not sleep well Monday night, and on Tuesday (Veterans'
Day -- no school, so I had nothing to distract me from guilt and dread) I got
on the phone to everyone I could think of who might be able to advise me about
this, including ProBusiness, my lawyer, Sandra Newell, my sister-in-law Diana
(a nurse who works as a case manager for Blue Shield in
ProBusiness would not talk to me. You've probably noticed there are all these new privacy laws. I had never been required to send ProBusiness the power of attorney that would have empowered me to speak on Grant's behalf. The person I spoke with wanted to know why Grant wasn't calling for himself, and she seemed fairly suspicious when I explained why he couldn't speak ("That's what YOU say ..."). She said if I faxed them the power of attorney, they would be able to talk to me in 48 hours.
Meanwhile, the consensus among the folks I DID talk to was that it was probably a bank error; but Tuesday was a bank holiday, so I couldn't talk to a human at the bank.
I was extremely worried. Many people had told me that companies continue to pay benefits packages for terminated employess only very reluctantly (that's why the COBRA law was enacted), and that companies will happily terminate COBRA for any reason, and non-payment is an automatic termination. Because I "knew" this, and wanted to ensure timely payment, I had, of course, set up an automatic-deduction arrangement. But it never occurred to me that the auto-pay arrangement would be a sufficient justification if payment was not made. I come from a family of meek Catholic Democrats whose experience with banks is mainly negative (being turned down for loans and such), so I don't have a lot of confidence in banks, or insurance companies, for that matter. I immediately took it for granted that even if the bank had made a mistake, the bank's mistake wouldn't constitute an excuse to the insurance company, since both were on the side of the Mean Capitalists against the Workers of the World.
I was wrong, however. Rhonda Williams of Adobe HR, with her usual admirable efficiency, had everything fixed within less than 24 hours! It turns out ex-employees are rarely eligible for the 11-month COBRA extension after the initial 18 months of coverage are up. The employee must be totally disabled, and the payments go up 150% -- still a wonderful deal for Grant, of course. Grant's case was the first of its kind for Adobe ex-employees; September would have been his month 19; so ProBusiness just stopped debiting our account!
I learned two things from this:
(1) The fact that I had set up the automatic deduction WAS sufficient proof of my intention to pay, and I was NOT liable for not checking the bank statements. In spite of my obsessive-compulsiveness and strict Catholic upbringing, here was something that was actually NOT MY FAULT!
(2) Hardly anyone balances their checkbooks to the penny (including my lawyer). If my sample is reliable, the proportion of non-balancers to balancers is about 10 to 1. Most people said they check for ballpark accuracy, like me; they only make sure the big checks (taxes, mortgages) get paid or deposited.
Meanwhile, after having postponed the trip twice, I finally went
back east to see my Mom for a couple of days last weekend. That was very good
for me. It was deeply affecting for me to
be in the general area of my birth, familiar landscapes, and in my mother's
wonderful-smelling house, breathing the border air (including the familiar
fumes of the paper factory in
My doctor has counselled me to visit Grant less, for the sake of my own stress levels and sanity. I am thinking hard about her advice. In my heart of hearts, I think I have been a little Catholic girl who believes she can make everything all right again if she just does everything perfectly -- thinking God will notice sooner or later, and when he sees how good I've been, he'll make everything like it was. I ought to wise up, I guess. I'm beginning to understand the importance of the last part of the prayer of St. Francis, about having the wisdom to know the difference between what you can change and what you can't.
Love, Sandy
December 20, 2003
Dear Friends,
Grant has a new bedsore, about the size of a silver dollar and about half an inch deep. It looks just like a pothole in his flesh. It's on his left side -- the side he was on in the OR when they did the Baclofen trial (they used the left side because he already had a wound on the right). It's very discouraging. Now he can't go in the wheelchair at all -- and one of the major purposes of the Baclofen trial was to enable him to get up in the chair more frequently and for longer periods of time.
He spiked a fever on Thursday; nobody knows why yet. They drew blood, started some antibiotics -- the usual stuff -- and by yesterday the fever was gone and he was feeling better. We may have an idea what it was when the blood results come back. They think maybe because the new wound is a little infected; or maybe a urinary tract infection.
He has mostly been out of it the last few weeks when I've
been to visit. He did agree to books on tape, so I got him several. He's "read" three already, so I'm
going to get him some more for Christmas week.
I will not be around. FiFi and I
are driving down to
Last Sunday Grant actually wanted to try to use his new thumb and finger movement to control the computer. It's been so long since he's said yes to the computer that I didn't have the EZ Keys hardware at Care Meridian anymore! I set up the PC and tried to put the mouse in his hand, but the hand isn't flexible enough. In fact, his hands and wrist seem very tightly contracted lately; I hope they are still doing regular range of motion exercises. Then the monitor started acting flakey. I think it might be time to try the portable again.
The problem is, after the disk crashed on Grant's IBM portable, Grant's dad installed a new disk, but since then I've never been able to get EZ Keys to work on the IBM. EZ Keys works fine on other regular PCs I have tried, just not on the IBM portable. That's why the EZ Keys adapter wasn't at Care Meridian; it was home with the portable where I'd been working on it, without success. I exchanged many complex and detailed emails with the EZ Keys support people, but the issue just kind of got dropped, because Grant never wanted to use the computer anyway. But now that he has a little movement in his hands, it might be time to try again. So if anybody would like to give it a try, I'd appreciate it very much! It was the Adobe guys who got EZ Keys running on the IBM before, when the EZ Keys people couldn't. Unfortunately I don't know what you all did and I have tried everything I can think of, including wiping the disk and re-installing all the system software, changing Registry settings, etc.
As an alternative, the EZ Keys people tell me it runs with no problems on other platforms (and this has been my experience also). So I've been wondering if anyone might have an old portable -- a Windows 98 machine would be fine (though probably not an IBM, unless you can figure out how to get EZ Keys working). I imagine some of you might be on your second or third notebook computer by now (I'm sure Grant would be -- the IBM was already his second). Anyway, if anyone has one lying around and would be willing to let Grant use it temporarily, that would be great. I think it would be unwise to invest in a slick new machine for Grant until we're fairly certain he will be able to use it consistently. Personally, I doubt he will ever be able to sustain attention long enough to do anything much with the computer, but I also think a manual interface would be more natural than the cheek button and maybe he'd have more success.
After suffering a major seizure on Thanksgiving, the patient in the room next to Grant died last week. He had been there since June 2001, slightly longer than Grant. He was a cat lover, but he took a shine to FiFi when I got her. He liked to pet FiFi, so I often put her on his lap or his wheelchair table, and she would lick his face. At his healthiest and most cheerful, Vic used to give Grant a wave and a thumbs-up when he'd ride past Grant's door. Everyone misses Vic. I expect Grant knows what happened, though Grant hasn't responded any time I've mentioned Vic's absence.
I didn't get around to sending out a Christmas letter this year, so I'll wish you all a great holiday and a great new year now.
Love, Sandy
P. S. On punkalunka, I've posted the photo of Grant and me that we used on our 2000 cards, because some of you have asked for a picture of him as he used to look. I'm sorry I didn't do this before -- some of the folks on this list never met him!