Grant 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,

Sandy

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.

Part of the problem is that his periods of wakefulness are fairly

unpredictable, so it's hard to make an appointment.

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 Gilroy every day, as I have been doing.

On his many unresponsive days, I feel like I'm just pestering him

by continually trying to involve him in activities (reading, the

computer, etc.). I ask him if he'd like the computer -- he doesn't respond.

I ask him if he'd like to read -- he doesn't respond. I ask him

if he'd like the mouthstick and letter board -- no response.

I set up the computer just in case -- he doesn't respond. So I sit

there and watch HBO or study or grade papers, and wonder if he

might prefer me not to be there, or if it's even meaningful to

talk about him having any preferences at all most of the

time. Above all, I wonder what it means that he still consistently

kisses me back, even if he won't respond to anything

else. Is that mainly a reflex at this point?

Also I have almost killed myself a couple of times

falling asleep in the car on the way to/from Gilroy. So I've

decided, with more than a little regret and guilt, to try not

visiting on my teaching days (Tuesday and Thursday), and perhaps

also not to visit on Saturdays, so I can go Aptos and rest

up a bit. I have enrolled in a 5-unit Spanish class, I'm

teaching a full load (3 classes online), so I have plenty to do.

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,

Sandy

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 ..." 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,

Sandy

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).

Love,

Sandy

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,

Sandy

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,

Sandy

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 responses. 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 occurred

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,

Sandy

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 -- Gilroy at

its best.

A friend of mine from grad school (Karen Allen) sent me a copy of The Diving

Bell and the Butterfly, written by the former editor-in-chief

of Elle magazine (Jean-Dominique Bauby). Bauby suffered a rare brain-stem

stroke that left him locked-in. He was only able to blink one

eye. He didn't seem to have a very efficient code for getting

messages out (nothing as good as the one Martin Newell invented

for Grant). To produce each letter, Bauby had to cycle through

the alphabet, sorted for frequency of occurrence in French, but still,

one letter at a time.

(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

Meridian! He's a young guy in a coma from a car accident, and

Therese wants to use Fifi to stimulate him. Fifi is just the right

size and temperament for this kind of work, and the kid's family and

docs have all given the OK. Of course, Fifi is already doing

unsupervised volunteer work in this field.

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,

Sandy

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 Meridian called Hill-Rom again, and the tech

came again, and again the guy said there was nothing wrong.

Then Grant got these new wounds. It turned out a different Hill-Rom

tech just happened to be in the facility for social reasons about

ten days ago, and the staff asked HIM to look at Grant's bed.

This tech was shocked and said of course it's broken! So the

Director of Nursing at Care Meridian went ballistic and

insisted that Hill-Rom replace the bed immediately, which

they did. The new bed is visibly puffing much more than the

other one, and Pas says Grant's wounds are now improving

more rapidly.

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,

Sandy

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 Los Gatos): hard-working,

with a big heart, looking out for him, noticing things.

I sleep better when I know Pas is taking care of Grant.

The other care-givers are competent and nice, too, of course.

It's just that Pas has been on his team for almost two years and

probably knows him better, medically, than anyone else at this point.

It's hard to lose someone like that. She is broken-hearted about

leaving her long-term patients also. But Grant and I both think

she's doing the right thing. She's limited in what she can do

as an LVN; she hopes to become a nurse practitioner, and we wish her

the very best. And she'll be around for a few more weeks.

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 Los Gatos, the nurses would always begin the

new shift by asking for a hand squeeze. This was back when

we were still hoping he'd recover some movement. Nothing ever

happened. After about a year, everyone stopped asking. The docs said

he'd most likely not make any further recovery, and I think people didn't

see the point in reminding him every day that he couldn't do it.

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 Stanford Hospital with him today. It was pretty

underwhelming; Grant was back at Care Meridian within

three hours. The urologist obviously hadn't read any of the

background info on Grant, even though Paula sent it weeks ago.

So there was Grant, with me and the two EMTs who brought him,

and this doctor. If I had known the sorts of questions

he was going to ask me, I would have prepared. For example, what

are Grant's current meds? Geez -- I know a couple but

there are a LOT and they change. What's he allergic to?

What surgeries has he had? I'm sorry, I do not know all

the medical names for all the procedures he's had. Something

for pooping, a couple of things for feeding, something for breathing,

a couple of operations on his wounds, and a whole lot of

central lines (do they even count?). I'm pretty sure that's

all in his file anyway!

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

Gilroy. I did not see the paperwork, but Paula says she

had written a note to him on Grant's file: in big letters,

"PAGE DR. MINER" -- Dr. Miner was WAITING to talk to him.

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

Meridian. The last thing we need is another massive bedsore.

I've also asked for a special bed for him at Stanford.

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 Gilroy very early. If you haven't

had a lot of experience with hospitals, you might not know that

the nursing staff typically changes over at 7:00 AM. Patients'

families usually come in contact with the day-shift staff. Care

Meridian uses 12-hour shifts, and they've also done a lot of

hiring recently, because they've opened up some new rooms.

The day people come on at 7:00 AM and the shift change period is

pretty busy, as the nurses confer and the shift coming in

gets updates on all the patients. I know most of the day people

at Care Meridian, but I don't know most of the people who work

nights. Also, the night people tend to be the newer hires

because the night shift is usually seen as less desirable.

I don't want to bore you with these details, but they are important

for explaining the events of Tuesday morning.

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 Gilroy in the early morning, since

I was planning to spend the day at Stanford, so I figured I'd

just meet up with the transport people there. So I was on the

road to Stanford by 6:30.

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 San Jose. Therese made several

special trips there to order and pick up the cushion. We used it

on the transport last week, and it worked well. The cushion was

sitting in Grant's room Tuesday morning, and we thought

he would be all set. The EMTs were supposed to know about it;

so was the night crew. All they had to do was put it under him.

But with all the confusion of new people and shift change and

a new EMT, the cushion GOT LEFT BEHIND!

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 Gilroy soon.

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 Meridian Thursday.

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 San Jose. VMC was Dr. Miner's first choice (she knows

a lot of people there) but we had ruled it out from the

beginning because VMC is not contracted with Aetna.

It's disheartening how the entire treatment plan for his

contracture has been ruled by considerations of insurance and

litigation (because of his supposed drug allergies).

One of the Stanford docs said they have a name for

what happened with in Grant's case, when "allergic to

vancomycin, gentomycin, ciprofloxacin" somehow mistakenly got

written into his chart: they call it "chart lore"!

One of the other CM patients recently had ortho surgery at

Los Gatos Community Hospital (which we'd prefer because

it's contracted with Aetna and close to where I live and they know

Grant), so I've asked the director of nursing at CM to try and find out

who the surgeon was at Los Gatos. (Does anybody know?)

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 Stanford Hospital.

The Aug 24 message was the last one, so if you got that,

you're caught up.

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

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 Gilroy, and his room doesn't have the best air

conditioning. He may just be too warm. These times are hard. He has always

"come back" before, so there's no reason to think he won't this time.

When I visit lately, I sit by his bed and hold his hand and often go to

sleep myself. I feel like I ought to be doing more, but I don't

know what I CAN do anymore, and I figure that maybe he knows I'm

there anyway, and maybe that has to be enough for now.

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. Aetna provides as many

hospitalization days as a patient needs, and up to now Grant's stay

at Care Meridian has counted as "in lieu of" hospitalization;

i.e., he'd be in a hospital if he weren't there because he has

needed complex and pretty constant care. Hospitalization would

have been more expensive, so Aetna was happy to pay for Care Meridian,

since it's much cheaper than the hospital (and also much safer

for Grant, since he avoids exposure to all the ambient bugs in

the hospital -- stuff like MRSA, for example). Two factors have

been especially weighty in Aetna's calculations: (1) Grant's

need for suctioning several times a day; and (2) his

need for complex wound care because of his (formerly massive)

decubitus ulcers. However, both of those problems are now

significantly better. He gets suctioned only once a day on

average, and his wounds are now almost completely healed, so the

dressing changes are not complicated or time-consuming. As a

result Aetna feels they can no longer justify the expense of

a sub-acute, and they want to transition him to a skilled

nursing facility. "Transitioning" him means simply that they

will no longer pay his room and board charges at Care Meridian

(about $700 / day). A skilled nursing facility (or "SNF", or

-- as the discharge planners pronounce it -- "SNIFF") is

considerably less expensive.

Aetna does provide 120 days per calendar year of SNF coverage, so

as of October 1, they will begin counting his days at Care Meridian

as SNF days (which are limited) as opposed to hospitalization

days (which are unlimited). Assuming he uses his 120 SNF days

for 2004 at the beginning of 2004, he will run out of SNF days

at the end of April 2004. When his SNF days run out,

assuming he doesn't get sicker, that will be the end of

all his room-and-board coverage from Aetna, since the Aetna coverage

is now under COBRA, but COBRA is limited to 30 months, and

his COBRA coverage runs out in September 2004. At that point,

Aetna will be out of the picture entirely, even if he

does get sick again. (Medicare takes over, but Medicare

coverage isn't nearly as good.) So we may be looking at

paying out of pocket for the room and board

charges at Care Meridian, starting in May 2004, and

down the line, when that becomes financially

unfeasible, we'll have to transfer him to a less expensive SNF.

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 Aetna and Adobe

have been exceptionally generous with benefits.

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

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 Meridian folks had

briefed me about what was supposed to happen. At minimum,

the urologist was supposed to examine the surgical site.

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 Gilroy, now that our

two-minute audience was up. He treated the whole matter

of the Foley removal as if it were entirely MY decision,

as if it wasn't a medical decision at all, but just a matter

of our personal preference, and certainly not something HE

(the person with the relevant expertise) could decide! Talk

about turning the tables; this was completely unexpected. He

seemed completely unaware that OF COURSE there would be

leakage, because the suprapubic tube was simply too small to

handle the increased flow with the Foley disconnected. He

seemed completely unaware of the issue of the rigidity of the

tube and the pain this was causing Grant. He was, in short, ready

to send us back to Gilroy after an appointment of perhaps two minutes

-- completely unconscious of the fact that the ambulance

ride from Gilroy alone that day was costing several thousand dollars,

and coming back in two weeks would be another several thousand,

(several hundred out of pocket per trip for co-pay).

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

Meridian, and told them what was going on.

Should we get the Foley removed? I thought that sounded like

a bad idea -- it would cause Grant a lot of unnecessary pain, for no good

reason. But if we didn't get the Foley removed, then why exactly

had we come? The director of nursing (DON) at Care Meridian said she'd

try to have Dr. Miner call the urologist so everyone could agree

on a plan for the day. But Dr. Miner needed the urologist's

private number. The DON (Paula) said it would be no use for Dr.

Miner to call the appointment line, because

the urologist's staff often doesn't answer the phone at all (Paula

speaks from experience, having tried to contact this urologist

numerous times), and then when you do get a

human, your chances are 50/50 it will be the MEAN ONE, who is

never helpful and is likely to insult you besides. Of course,

I was with Grant and the EMT in the exam room, and I didn't have

the urologist's private number, either, and the only way for me

to get it would be to confront -- the Mean One herself.

Going back to Gilroy immediately was starting to sound like a

good idea. But I didn't want to waste this trip, and I figured

we might as well remove the Foley if the only down side would

be that it might have to be reinserted. I thought the urologist

would be the one to remove it, so that if we decided to have it

removed, we might at least get a little more face time with him

and be able to express our concerns more fully.

But, no, we never saw him again. A nice nurse (or possibly

a tech of some sort -- she wasn't wearing a badge) came in to do it.

The urologist had neglected to warn her of the difficulty in

accessing the site. Of course, she couldn't remove the Foley AND hold up

Grant's leg at the same time. I explained my reservations to

her, and she said it seemed to her that if the urologist wasn't

going to change the suprapubic, it would probably be best

NOT to remove the Foley, i.e., to do nothing. She went back

to the doctor to try to explain my concerns, but when she

returned (very quickly) she apologized and said

he had said he wasn't going to change the suprapubic today,

period, because it wasn't the right time. She seemed

genuinely very sorry, but stuck in the helplessness

of people at the bottom of the medical food chain. She said,

"I tried." I said, "He doesn't listen." She said,

"Yes, that's the way he is." (Of course it

WAS the appointed day, and of course he hadn't even looked

at the site, so how he could be so sure it was

too soon, and besides, the rigid catheter was going to cause

Grant two more weeks of pain ...) I was so furious and

frustrated that I decided we might as well go back to

Gilroy and NEVER see this urologist again.

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 Meridian after this ordeal (during which he was steadily looking

worse and worse -- profuse sweating, respirations more and more

rapid and shallow -- I am certain he was fully aware what was

going on), he had a temp of 103.8! He looked terrible. The staff

immediately began rehydration and cold packs and Tylenol. I

was terrified and exhausted and already pretty weepy from the

Stanford experience, so I did something else unusual for me

(something I have done only one or two times): I called friends

for support. I had seen Martin and Sandra Newell the

previous evening, and Sandra had even offered to come up to

Stanford with me, but I had said I didn't think it would be necessary,

since I thought it was going to be a pretty routine visit. Martin and

Sandra came right down to Care Meridian and held my hand

for a couple of hours, thank goodness. And Grant's fever

went down a couple of degrees.

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 Sandy's Excellent Adventures in the

Big Hospital.

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 San Jose State in that way).

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 Gilroy to do Christmas shopping.

The VTA (Santa Clara Valley Transit Authority) has funding

to take disabled people on vans, etc., anywhere in the county

for like $3 a trip, for the disabled person and a companion,

if necessary. The CM people plan to train family members to do the

basic nursing care skills (suctioning and giving water), so

the family members can accompany the resident without a nurse.

(This is only for patients who are medically stable, of course.)

The idea is that even if the resident is out of it, the

experience might help wake him up, and I think it's a great

idea for me, too, because I could feel less useless overall,

and would give me something special I could do for him, too.

Grant won't be able to take advantage of the service for at

least a few more months, because he can't sit in his wheelchair

long enough yet. But after the Baclofen trials, he'll be

up a lot more (I hope).

I will be going to NY (via Montreal) to visit my Mom Nov 7-12,

so if you were thinking of visiting Grant, that would be a

good time because he might be a little lonely then. (Or he

might just be asleep -- you know how that is.)

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 Hospital, where Grant was cared for

the first six months of his illness. So we know a lot

of nice folks there, and it will be a familiar place for

both of us (bringing back a lot of terrifying memories, of

course).

This week Grant has been getting up every day. His new

wounds are healing nicely. He had a spectacularly awake

day Wednesday. Care Meridian has had some staff changes

in the past few months, so a couple of the Care Meridian

nurses working Wednesday were relatively new, and had never seen

him like that. They were very excited, thinking this was

a new sudden dramatic development -- not knowing, of course,

that this happens once in a while. For me, these awake days

are actually harder because Grant is more conscious of his

situation and feels sad, lonely, anxious, frustrated, etc.

He suffers. (Some philosophers distinguish between pain

and suffering. Pain is just the physical sensation, and

how it affects a being depends a lot on whether, and how,

the being experiencing the pain is able to create a

conceptual framework in which the pain is experienced.

So a dog in pain, for example, probably doesn't have much of a

framework -- he doesn't worry how long it will last, or

fear that he won't be able to pay the bills, or fear that

he will be abandoned, or feel frustrated that nothing seems

to help, or worry that the Big Dog is punishing him for his

sins, etc. He's just with the pain, relatively calmly;

he is not suffering, because he is not busy comparing his current

painful state with his previous pain-free happy life.

Unfortunately, humans aren't like that. They suffer: they

experience the physical pain PLUS all the conceptual

derangement.) I think that although Grant frequently

experiences pain, he is ordinarily not awake enough to suffer.

This is my hope. But then you get days like Wednesday, when he's

clearly suffering (and not in pain at all).

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

Los Gatos Community Hospital, mostly in the Rehab part.

They injected the drug in the OR in the morning. Before the surgery,

a cheerful and energetic physical therapist ("cheerful" and

"energetic" are kind of redundant adjectives for physical

therapists, when you think about it) -- anyway, she came into the pre-op

area and tested his range of motion, for baseline comparisons.

Then she reappeared periodically throughout the day to take

measurements again. She noted dramatic changes within

the first few hours. Grant was fairly awake, so I asked

him if he noticed any difference in feeling, and he

said yes. I asked if it felt better, and he indicated yes

to that also. I had expected him to spend night in

the hospital (insurance had approved a hospital stay of 23 hours),

but he ended up going back to Care Meridian around 9 PM.

Now it is a matter of getting all the insurance ducks lined

up to have the implant surgery.

When I got home Monday night, there was a crisp letter in the mail from

ProBusiness, the COBRA administrator for Adobe, saying Grant's

Aetna coverage had been terminated as of October 30, because the

premiums had not been paid since August. I checked the bank

account online, and it turned out, to my shock, that the last

automatic deduction had indeed been made in August, and that

ProBusiness had not received a payment for almost three months!

The letter was extremely scary: it said there was no appeal, that

his insurance could not be reinstated even if payment was made.

I immediately assumed the cancellation was my fault. Since I

am no longer poor, I do not check my bank statements

very carefully. Grant used to manage the joint checking account,

and every month he would reconcile the bank statements to the

penny, but I had stopped doing that. I was tormented by the thought

that HE would certainly have noticed if the ProBusiness

payments had not been made!

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 New Jersey), and Rhonda Williams in HR at Adobe.

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 employees 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 Cornwall, Ontario), and generally remembering that while

Grant changed me forever, I was someone before I knew him.

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 San Diego to spend Christmas with Grant's family.

I haven't seen all the nieces and nephew in a very long time.

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!