July 13, 2007


Joe is improving finally. His white cell count is normal and his temp is too. Though his lungs are still cloudy, he underwent a tracheostomy yesterday and came through with flying colors, though he was scared at first to be breathing through his neck and not his mouth. Today, I went in and discovered that he had already been up and transferred to a chair for the first time in a week and a half, where he had been given oxygen through the vent but no pumping, so that his lungs and chest muscles had had to breathe on their own. Though he felt sore afterwards, he had no idea that he was doing it, or having to do so as no one told him the pump was off, so it was unconscious, the reflex action of breathing -- a great sign.

So now what we are looking at may be better than we could have hoped for a week ago. Joe still needs weeks of rehab, it seems, but after that, if he can be weaned from the vent, especially if it is fully weaned at least for a while, then he will be able to come home. I know that won't be forever, but it would be too bad for him never to see his apartment again, after having left it so abruptly a week ago last Tuesday. He might have to use the BiPap more, sure, but if he is not tethered to a vent, he will essentially be independent and mobile, more or less. Right now, he is tired out and still only able to spell things on the alphabet board I made for him rather than write or try to speak. But the crisis has definitely passed and he remains in ICU only because he is still on the vent and not because he is still acutely deathly ill (though of course, he still has ALS).

As for me? I am pretty tired...I dunno what else to say. My computer hard drive was replaced "just in time" they said, but when I got home, I found all my documents and music and pictures wiped out and most of my applications useless. Now I can only hope they can resurrect them or years of work is lost. I asked them to back it up, the hard drive, a week ago. They should have that good copy, but I can't be positive. I am tired, too tired to care at this point. What does it matter? What does anything matter? Joe is alive at least. And Lynn is still alive, though in pain as always, and nothing the doctor does, which is precious little, mind you, changes that. (Once you are an 80 year old woman in chronic pain taking oxycontin, the docs pretty much forget about helping you or doing anything else for you...Never mind that the oxycontin doesn't even work!) Lynnie/Carolyn tells me that antidepressants actually work to treat pain, in and of themselves and apart entirely from any psychiatric effect, but Lynn L doesn't seem interested, or Cy doesn't, or the idea scares them, or the name does...Either way, neither of them have looked into it, despite my giving them articles about the usefulness of ADs for a percentage of people with neuropathic (nerve) pain. I hate to see them stumble around in the dark, not knowing any better than to do what the doc says: take oxycontin and trust him. It's obviously not good enough, since Lynn is often in excruciating pain, oxycontin or no. Yet they will not challange him to change his regimen to something that does work or refer her elsewhere if he won't. They simply assume he knows what he is doing and that if he doesn't change her regimen there is a very good reason not to, ie there is nothing else to try (HAH!).

I know, I was supposed to write about how I am, but all I can say is, I am tired and don't know which end is up. I'm not going to write any more than that. This computer thing threatens to overwhelm me...

Posted by pamwagg at July 13, 2007 08:26 PM | TrackBack


I lost a great deal of my poetry when my hard drive crashed one time. It was devastating. Now I make a hard copy of whatever I write. Somehow it is too tiresome (even though I desperately want to save it) to download to a CD. I am so fatigued from antidepressants and Zyprexa right now that really all I feel like doing is lying in bed and checking my pulse to see if I really am alive. But you know how that goes, I'm sure.

Posted by: Carolyn at August 14, 2007 02:24 PM

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