2004

Monday February 9, 2004

Dear Friends,

Yes, this is the first message of 2004. I haven't written since December because not much has changed. Everything is on hold because of the new wound -- even treatment of the wound is on hold, since dead tissue is still coming off, and they can't begin to treat until all the dead tissue is gone. The plastic surgeon (Maggot-Man) was called in to consult, but he hasn't visited because there's as yet nothing for him to do. The Baclofen implant has been put on hold because Dr. Miner doesn't want to risk a surgery when there's an open wound so near the site. And so he still can't get up in the wheelchair; he hasn't been up since last May.

Other therapies (PT, OT, Speech) have also been on hold for several months because of a bizarre bookkeeping problem. As you may recall, Grant's primary insurance is now Medicare. Medicare likely will not pay for therapies, even though Grant has an MD order for them. Aetna, now his secondary insurer, is ready and willing to pay for them, however, but since Aetna is secondary, they can only pay AFTER Medicare denies payment. In order for Medicare to deny payment, someone has to submit a bill for the therapy to Medicare, and get a letter of denial. Are you with me so far?

The company Care Meridian contracts to do the therapy (Therese's employer) is called Sundance. Sundance bills Care Meridian. Sundance will not bill Medicare directly, even though, according to Grant's Aetna nurse case manager, they are supposed to by law. The case manager doesn't know what's going on there, and no one seems able to find out.

Care Meridian CAN'T bill Medicare for the therapy because Care Meridian is not a Medicare provider (i.e., doesn't have a Medicare provider number). Aetna won't pay until they get a denial of payment from Medicare, but since no one is billing Medicare, no denial of payment is being issued. I am told that this is not the first time in Care Meridian history that a patient has Medicare become primary, and that in these cases, they do something called "conduit billing," whereby Sundance bills some OTHER facility (one that is a Medicare provider) for therapy on Grant, and then by some magic, they get paid (or turned down). But even if they're turned down, they can then bill Aetna.

This is WAY too complicated, isn't it? I have proposed that I pay Sundance up front and then I bill Medicare, I receive the denial, and then I get reimbursed by Aetna. The Aetna case manager says this should work, because it doesn't matter WHO gets the denial. But Sundance won't go for it. And meanwhile no one is working with Grant to e.g., take advantage of his new hand movement. Also, he doesn't get the 10 hours a week of socializing with the nice therapists, which I think would make him less lonely (IF he's lonely, which is hard to say).

Grant indicated to me the other day that he still experiences his life as a dream. You might remember that one of the few lucid things he spelled out in the first year of his illness was "M-U-S-T B-E A D-R-E-A-M". If he does think that, it would explain why he still apparently has hope, doesn't do any exercise on his own, rarely produces any kind of new information, has no affect to speak of. Even September 11 might easily have been taken as the stuff of dreams, don't you think? If he believes himself to be dreaming, of course, there's no way to convince him otherwise (in his dream I'm telling him he's not dreaming but that can't be true, because it's all happening in the dream). In fact I have NOT told him he's not dreaming; even if he would believe me, I'm not sure it would be the kindest thing to do. I think maybe we all feel incredulous even now; his situation is straight out of science fiction. How can it be happening? Maybe on some level Grant sees that psychotic denial is overall his best strategy for maintaining whatever psychic wholeness he may still have.

Love, Sandy

April 5, 2004

Dear Friends,

Care Meridian is now almost full, so Grant has had a roommate for the last five weeks or so. Actually he's had two different roommates; the first one asked to be moved to another room (nothing to do with Grant). Having a roommate brings new issues. The biggest, in my opinion, is noise. There's a fairly loud ambient hum just from Grant's bed, plus the feeding tube unit (times 2 -- his and the other guy's), plus the mist machine (also times 2); that's not even counting the breathing treatment machines, which are not constant but are really loud. Anyway, with all that noise, the TVs have to be even louder, and with two TVs going -- well, you can imagine. The first roommate was able to use earphones all by himself, but he claimed not to have any, so I had to ask him to keep it down. Grant ended up wearing the earphones, but of course Grant can't remove them, so it's more of an inconvenience for him -- that is, it's an inconvenience if he experiences it that way, though I'm not sure he always does.

The new guy doesn't talk, and doesn't seem to have a lot of visitors, but he does have a small son and they keep kids' programs on the TV when the kid is there. Grant says he doesn't mind this guy, however.

I finally got the therapy billing straightened out, so Grant is getting all his therapies again. Speech tried a device with him that makes a constant hum, which you can alter to produce sounds by making the appropriate mouth movements. Grant doesn't think much of that technology, and can barely make it sound different even when he changes his mouth positions. I tried it, and it's not that easy to use even if you have full mouth flexibility (which Grant does not). This week Grant is supposed to try the Passy-Muir valve again; Dr. Miner had nixed it a long time ago because of breathing issues. He is interested in trying the Passy-Muir again; he seems to be able to mouth words more easily now.

There are no pressing insurance issues at the moment. His Aetna insurance is going to stop in September, so there will be some big changes then. I am going to try to keep him at Care Meridian as long as possible.

I got an email out of the blue from a guy who said Grant's name is showing up on a major amount of spam! In 1995, before Grant joined Adobe, he had a software business. It was primarily mail-order, but he ended up acquiring 256 static IP addresses for his company, Cognicon. Cognicon stopped doing business when Grant went to work at Adobe, and I vaguely remember having a conversation with Grant about these IP addresses. I don't think I understood much of it, but I remember he was wondering whether to keep them. I gather he had to pay some kind of maintenance fee to keep them. I think he did keep them, but after he got sick, I didn't renew them, but some super-spammer did, and now cognicon.com's name is on all kinds of spam. Apparently they are "zombie" addresses which someone has "hijacked". The use of these addresses does not affect my machine (cognicom isn't a domain on this machine and there is no user grant@cognicon.com); my ISP is not involved, apparently. I know this is not the sort of thing Grant would want to be associated with, and I sent an email to spamhaus, so we'll see what happens. All the net sites I have found about hijacked zombie IP addresses recommend that you inform your ISP, but I'm pretty sure Pac Bell isn't being affected, so I'm not sure if they'd have an incentive to do anything about it.

You can read all about this if you go to

http://www.spamhaus.org/sbl

Then query SBL reference number SBL15076. It's really amazing how much personal info about Grant they have posted there. It says his last known place of employment is Adobe, for example; and they know about punkalunka.org! The guy who emailed me is a white knight sort who was getting cognicon spam and then went to spamhaus and then punkalunka and put two and two (and two) together.

Grant just finished listening to the first book of the C. S. Lewis space trilogy (Out of the Silent Planet) on tape, and says he liked it a lot. I'll have to find the other two books! I got the first one from the public library, so maybe they have the rest.

Grant's still not allowed to get up. It's now been almost a year. Everyone is trying to persuade Dr. Miner to let him get up, even if for only 15 minutes. His new wound is healing well, I understand. It's been such an amazing spring, and he's missing it! Health-wise, he has been very stable: no UTIs, no fevers, not a lot of pulmonary gunk. Getting up would be good for his lungs. And he hasn't been able to take a bath in all this time either (though they keep him very clean, and even wash his hair).

The last week or so has been tough for me, since it's the third anniversary. If things keep going as smoothly as they've been going, Grant will have his fourth birthday away from home in June. I still miss him so much!

Love, Sandy

July 19, 2004

Dear Friends,

I have had “Grant update” on my list of things to do for quite a while now, but I have had nothing much to report about him.

As always he has good days and bad days. He had his fourth birthday in the hospital June 16. He has had a couple of urinary infections in the last few months, but as soon as he gets anything, they put him on antibiotics, and he beats it. He currently has a problem with his trach tube. The tube gets replaced every few weeks. Now some tissue has grown around the tube, so it’s going to take some delicate maneuvering to remove the old one. The tube is fairly close to an artery and they’re going to have to exert some force to detach it. They don’t want to take any chances pushing and pulling near there. So the doctor has decided the Care Meridian nurse shouldn’t attempt to change it without backup. So they’re going to take him to the hospital, maybe as soon as today, and have it done there.

I think I mentioned that he developed a new wound last fall, as a result of one of his many transports. That wound is much better now, but his sacral area (where he had the filet- mignon-size wound a couple of years ago) remains very vulnerable. He had a couple of flap surgeries three years ago at Los Gatos to repair that wound. Skin did grow back, but the skin is very thin and doesn’t have much fatty padding, with the result that he’s always got some new abrasion starting there. This is in spite of the fancy bed.

The bed situation has improved somewhat, however. He now owns his Clinitron bed; he used it so long at the (exorbitant) rental rate that the insurance company finally paid for it. The bed is too short for him, as all hospital beds so far have been. I was told that Care Meridian seriously investigated whether a longer comparable bed might be available, but they came up with nothing. (I don’t know what tall people with bedsores are supposed to do.) Anyway, it was not a pressing issue for the past couple of years because his legs were getting more and more bent, so they didn’t reach the bottom of the bed anyway. Now that he’s a bit more straightened out, his toes collide against the panel at the bottom of the bed, and toes are a dangerous area for pressure sores too! We have been trying to think of a way to remove the bottom panel, but that’s where all the electronics are, and there’s not enough cable to detach it. However, Miguel, one of his current nurses at Care Meridian, finally unscrewed one side of the bottom panel, so it can at least swing out a few inches. Such a small thing, but I imagine it might make some difference in Grant’s quality of life.

Grant is finally able to go outside again, for 20 minutes at a time (once up and down the driveway and around the building). He is now eligible for county para-transport services (practically free van trips). This might turn out to save us lots of money in ambulance fees for non-emergency trips. Get this (a wonderful absurd bureaucratic regulation): In order to get the free van service, the disabled person -- who cannot use public transportation and presumably cannot afford a taxi -- must show up IN PERSON to the office in San Jose to apply for the service. For Grant (and other disabled people, I imagine), that meant going BY AMBULANCE to the county office…

Grant’s COBRA coverage will finally stop at the end of next month. He will still have Medicare and be eligible for some minimal additional hospitalization insurance, but there will be no more coverage for Care Meridian “room and board”, virtually no prescription drug coverage, and no coverage for “hospital incidentals” like ventilator rental, dressings, etc. He will still get the equivalent of two-thirds of his Adobe salary in long- term disability until he is 62, so that will help. But soon we will be in the strange land of medical “private pay”, which is something like the strange land of airplane fares, where nobody on a flight has paid the same ticket price.

Grant is not eligible for public assistance, of course, because he has too many assets. We must “spend down” his assets before he can qualify. This will take some time; exactly how much time depends on what rate is negotiated with Care Meridian. Care Meridian quoted me a private pay rate of $1000/day for room and board only (prescription drugs are another $3000-$10,000/month). YIPES! Naturally I have been planning for this for a long time, and have money set aside for the spend-down period, though I was estimating the costs on the basis of what Aetna pays for room and board (about $600/day). At that rate, he could stay at Care Meridian as a private-pay patient at least another two years. Care Meridian is usually not even half full, so they want to keep him. And it would be best for him, since they know him there, and they provide great care, and they actually CARE about him. I am pretty sure we are going to work something out.

I recently had DSL problems and got changed over to a “better” DSL (called “Pronto”). In the process, I lost the static IP address that was being used for punkalunka.org - so there has been no punkalunka for about a month. I believe I am in the process of registering the domain name punkalunka.org with pacbell, so I can host it from their server. I might have to call “Need-a-Nerd” soon!

I am gradually figuring out how to be on my own. On Aptos View Road, where our vacation house is, I regularly walk by two trees - a redwood and a madrone - that have grown entwined. Their trunks are completely merged, and the madrone twists around the redwood in a rather sensual way. For most of the last three years, my heart has broken whenever I see those trees. I think of course that Grant and I were like that, and that we’re like the trees also in that you couldn’t separate them now without killing them both. But last weekend, I walked by those trees without even noticing them. That’s pretty sad, too, but it’s the way things are and the way things have to be.

Love, Sandy

Saturday October 23, 2004

Dear Friends,

Grant was hospitalized for about ten days right after I sent the last message in July. He had pneumonia, but he is fine now. While he was in the hospital in July (in Gilroy), he was as awake as I have seen him. He is having another very awake phase now, after many discouragingly unresponsive weeks. It's the usual up and down. But he was lots of fun yesterday.

For the first time in over three years, he has no bedsore problems. All the "d-cubes" (decubitus ulcers, aka pressure sores, aka bedsores) have healed, except for the newest one, which looks like a belly button. So now they're getting him up whenever he wants to. He goes outside for an hour or more. He's been listening to books on tape at a steady rate. He always knows where he is in the book, even if he doesn't appear to know anything much else.

Because of his good skin condition, we are now preparing to get him the Baclofen pump. You may recall that last year around this time, he had the Baclofen trial, and the drug did seem to work well for him to alleviate spasticity. He has been getting Baclofen through the g-tube for years, but they tell me the drug works a lot better in the pump form, continuously administered in smaller concentrated doses. It would be nice to see him less contorted. After the tendon release surgery, also about a year ago, he looked better, but has now started to twist up again. His hands especially look much worse; it is no longer possible to straighten his fingers. Partly this is due to his "non-compliance" -- he refuses to wear his hand braces much of the time.

Everybody is bummed about Christopher Reeve dying from sepsis from a "d-cube". Most of the Care Meridian patients have bedsores, from previous hospital stays, i.e., not acquired there! The Care Meridian nurses are reassuring the patients by telling them Reeve was probably also "not compliant" because he was too aggressive in his activites. They don't want the patients to be too scared. Dr. Miner is very very very careful about bedsores. Grant could easily have died if his initial ones had gotten infected.

I was encouraged by a conversation I had the other day with one of the CM nurses. She used to work at the subacute at El Camino hospital, and she thinks it's the best place around. She said she didn't want to leave, and works at CM because she moved to Gilroy and the commute to Mt View was too much. El Camino takes MediCal patients -- something to keep in mind when the time comes.

The Fearless FiFi is cute as ever. She is now in her funny rain mode. If I open the door for her, and it's raining, she goes to a different door, like, well, just because the sun's not shining out of this door, there's always another door! Then she looks at me with those big eyes, like "Mom! Why don't you fix this?" She actually SIGHS! She is also very smart about puddles -- she goes to the narrowest part and jumps over. Yeah, that's some scary water.

I am in a better place about all this. I have been thinking about new adventures and projects for myself, since I guess I can't do much for Grant and I don't think he would want me to suffer indefinitely on his account.

Love, Sandy

November 12, 2004

Dear Friends,

I just got some new photos of Grant, and I thought you might like to see one.

http://www.westvalley.edu/wvc/ph/grant_head1_small.jpg

Grant looks rather like an Easter Island head, no?

The Baclofen implant has not happened yet, because Grant's sodium level has been on the low side for a couple of weeks now. Maybe next week.

I am off to NYC for four days today!

Love, Sandy

Wednesday December 8, 2004

Dear Friends,

In the past couple of years Grant’s body has gotten all twisted up because he couldn’t relax his muscles. His general outline in the bed is still like an upside-down question mark. By Fall 2002, Grant’s muscle spasms had become very painful (“10” on a scale of 1 to 10). Many of his medical issues in the last couple of years have been a result of that pain and contracture. For example, he had to have surgery to insert a supra-pubic catheter, because his big thigh had ended up right over the general peeing area, and his caregivers couldn’t access his Foley anymore. He went on Fentanyl, a powerful pain medication, over two years ago, and has had to wear numerous painful leg, arm, and hand splints, without much result. In Fall 2003, he had surgery to release the tendons in his leg, but his legs have pretty much returned to their twisted position. The Baclofen pump was supposed to address both the pain and muscle contracture issues. Baclofen is an anti-spasm medication.

We were hoping that as a result of the Baclofen pump, Grant would be able to straighten out enough to sit in his wheelchair longer, and so be able to clear out his lungs more efficiently and maybe go on an outing occasionally in the paratransit vehicle. That was all.

Ten days ago, after more than a year’s delay (due to a new decubitus ulcer), Grant’s skin was finally healed enough for him to have the surgery to insert the Baclofen pump. He has been receiving Baclofen continuously since November 29. The Baclofen pump appears to have worked well for the pain, and Grant has been able to discontinue several pain meds. His body is now generally much more relaxed and bendable. He can voluntarily move his hands, wrists, and shoulders. But the most remarkable and totally unexpected development is that HE HAS BEGUN TO SPEAK.

I feel like I am dreaming.

He is not only making sounds (using the Passy-Muir valve on his trach); he is uttering whole sentences, all completely lucid and appropriate. He is even making jokes. He has become a person again.

Grant was unusually awake last week after the surgery last week, but no more than on the rare good days of the past years. So when I went to Care Meridian yesterday, I expected he would be asleep again, since invariably, his good days/weeks have been followed by a return to sleepy-land. When I got to Care Meridian yesterday, he was with Shannon, the speech therapist. Everyone in the place was acting a little funny, and telling me to go see him. Someone said he had a surprise for me. But I didn’t rush in to see him, since I figured it was some new little cute thing – at best something primitive he had done with the mouth stick – something ultimately insignificant in the great arc of his illness.

Last week Shannon asked him if he thought he was ready to use the speaking valve. He had nodded. She had said “Wouldn’t it be a great Christmas present if you could talk for Sandy?” He had nodded. I had said something vague and positive, but I didn’t believe for a minute it would actually happen.

I saw him from the hallway and he looked wide awake, though. I went over to the bedside, and Shannon said Grant had a surprise for me. I didn’t notice he was wearing the speaking valve. Then he said “Hi, Sandy”. It wasn’t exactly his voice, but the words were loud and clear. I was speechless. Then he took a deep breath and said “I love you.” Then he took another deep breath and said “Merry Christmas.”

I started to cry.

Shannon said, “This is his Christmas present.”

He then proceeded to say all kinds of stuff. I had just seen my uncle Jim Brydges, who was the one who had originated the call for Grant to “reboot” when he first got sick. I told Grant that Jim had reiterated the reboot request. Grant said out loud, “I’m trying.”

It is hard for Grant to say a lot at one time, because he has to push a lot of air out, so his utterances are typically short. But this is something he can practice.

We asked him who the President was, what day it was, how long he’d been sick, etc., and to my surprise, he knew all that. We asked him who the governor was and he said, “Schwarzenegger.” I said it was so great to hear him talk, and he said, “It’s about time.”

He is smiling, even shrugging his shoulders.

We called his parents and he spoke to them on the phone. He said, “I love you both.” His Mom cried. His Mom said his sister Teresa had been dreaming about him talking; he said “She’s nuts.”

The people at Care Meridian are now arranging an outing for him to see fireworks at Bonfante Gardens. Arlyn, the activities person, said they were also thinking of taking him to Christmas in the Park in downtown San Jose. So I asked him if he remembered the public art object in the square downtown – always a source of much merriment to him – the sculpture of the snake Quetzalcoatl. I said, “What does it look like, Grant?” He answered – clear as can be – “A TURD.” This got a huge laugh.

(If you’re not familiar with our giant poop-snake, see

here

Click to enlarge the image.)

We talked -- really talked, about all kinds of thing -- for about two hours.

I can hardly believe this has happened, and I am afraid to hope it will continue, but if it does, well, this changes everything! This is the biggest single piece of progress he has made since he got sick.

I’m going back today when Shannon is there. He is supposed to wear the speaking valve only under supervision, but I expect that if this keeps up, he’ll get orders to wear it whenever he likes.

I still can hardly believe it.

Rejoice!

Love, Sandy