WAGblog

2 more new poems, plus

NEGATIVE SYMPTOM #1

Over the frozen pond, the tree hangs empty --
no leaves, no skeletal nests, bare knuckle branches.
The sky is gray as ice and as featureless. Beyond:
brown hills. Far houses serrate the horizon. All
this framed in the window glass he smokes by,
all day seeing none of it, mind lumbering
over the same slow ground -- how at eight
the children called him Icky, for Ichabod,
the name sticking through high school, though
for all that no friend ever did; how one day he’d
show them: talent, awards, money, renown --
show them something... From time to time he
considers the possibility of getting to his feet,
of shouldering on a coat and venturing outside
for a walk. But thinking gets in the way
of his way and he stumbles over the planning.
Inertia directs him to another cigarette. Smokes.
Stares out the window apparently at nothing.

THE CATATONIC SPEAKS

At first it seemed a good idea not to
move a muscle, to resist without
resistance. I stood still and stiller. Soon
I was the stillest object in that room.
I neither moved nor ate nor spoke.
But I was in there all the time,
I heard every word said,
saw what was done and not done.
Indifferent to making the first move,
I let them arrange my limbs, infuse
IVs, even toilet me like a doll.
Oh, their concern was so touching--
and so unnecessary. As if I needed anything
but the viscosity of air that held me up.
I was sorry when they cured
me, when I had to depart that warm box,
the thick closed-in place of not-caring,
and return to the world. I would
never go back, not now. But
the Butterfly Effect says sometimes
the smallest step leads nowhere,
sometimes to global disaster. I tell you
it is enough to scare a person stiff.

Yesterday Joe had his feeding tube sutures removed, finally. His GP wouldn't do it, his GI doc wouldn't do it...only interventional radiology would do it. Yet all that had to be done was one snip and the stitches fell away! I tell you, I could have done it and would have, had I been brave enough. Had I known only that the bottom part, the half that was inside Joe, remained inside, and was pooped out, I would have had no concern about snipping off the top half and would have done so, rather than go through the hoopla we had to go through... I guess it was better that a professional did it, though I have never known why anyone with half a brain couldn't take out stitches! (I didn't go to med school for nothing, after all...)

Afterwards, I drove us all the way from the hospital, a distance of about 6 miles, a long distance for me, back to our apartment building. This entailed getting us down from 7 floors of a parking garage, which I haven't done in many years. I did get sleepy on the way home, but managed to stay awake and drive safely. Joe cheered when I finally pulled into a parking space in our lot. I guess he had been nervous about my driving, though he said I did a good job. I was driving his car, so I can understand his being wary.

He still doesn't use his bipap breathing machine, which is worrisome as people with ALS on another website tell me that with a lung capacity of 40% his oxygen levels may well be dropping too low at night when breathing is shallower and hence could be at risk for passing away in his sleep. This is very scary, and I think it scared him when I gently let him know that it was a possibility (if not now, since we don't know for certain this is happening and won't until his sleep study in 2 weeks, but definitely will be eventually; the ALS patients at the website felt certain it was now, given the figure of 40%). I probed a bit further this time about why he didn't use it, and it turns out that after he takes it off to cough, he has to reset the machine, which beeps an alarm that he turns off. But to reset it, he has to get up, because his nightside table is too small for the machine, so he has set it a ways away from the bed. Add to this the fact that his 20mg Zyprexa dose at night so zonks him that he can barely sit up, let alone get up to turn on the machine again and I could see there was a problem. "So Joe," I said, "what about getting a bigger nightside table?" That seemed a simple thing he could do to solve one problem. If the machine were right by his bed, he could just reach out and reset it and not have to get up at all. Then when necessary he could take off the mask, cough, put it on again, and go back to sleep still using the bipap.

He allowed as how this might be possible and said he would move the keyboard table over to his bed instead. But another problem, and bigger, was his sedation from the Zyprexa. He could barely tear the mask off his face in order to cough. He did so only because he was desperate. He usually coughed then immediately fell asleep again, without enough time to put the mask on again, or to even think of doing so, let alone reset the machine. This is worrisome because he ought to wake more easily; if his oxygen level gets too shallow, it should trigger an awakening so he takes a deeper breath (sleep apnea). With the Zyprexa, he is so sedated, he can't wake up even when his O2 is low.

With this in mind, I made the suggestion that he perhaps try taking the Zyprexa in divided doses during the day, 5 mg at a time with 5mg at bedtime. His pulmonologist gave him modafinil (provigil - a non-stimulant) for alertness, so he could combine that with the daytime Zyprexa if he found it making him drowsy in the daytime. I dunno what he should do in the end. All I know is that no one else is helping him with these things, so we have to figure them out ourselves. My ideas surely can't do any harm.

Later: Just got a call from Karen, who told me that Joe informed her that he has been having trouble breathing recently, during the day. She said he didn't go into detail, except to say that he hadn't yet told me, implying that he hadn't yet had the opportunity. I don't know what to make of this. On the one hand, just two weeks ago, his O2 when awake was 95%, which seemed to imply that he was compensating adequately for loss of diaphagm strength with the use of his chest and back muscles and intercostals (muscles between the ribs); on the other hand, those muscles will weaken eventually too, and they may have started to do so now...So who knows what his 02 is. Or his O2 is fine but he IS having trouble breathing, and keeping it fine...Oh, lord, I don't know what to think or do. But tomorrow he goes off to Boston with Karen (she can help him drive once again) to attend an engineering conference he has dreamed of for months, and won't be back for several days. So there is nothing I can do to help until Saturday or Sunday at the earliest. I did convince him to bring and try to use the bipap machine, which he will do. But beyond that, I can only wish him luck and hope he has a fantastic time, doing what he most loves to do.

Posted by pamwagg at November 14, 2006 04:34 PM