September 29, 2006

Writing as the music plays...

Music is "playing" even as I write this, as it plays every day, every hour, every minute, of the day and night. It no longer frightens me and rarely even irritates me, though it sometimes fills my ears and head with so much sound that the whole world seems composed of uncanny "music" (in an unpleasant way), so much so that I can't help but notice it. But right now, it is background musack and so it barely registers.

I have been corresponding by e-mail with various people at the Clinic where Joe has been seen twice already, trying to get things straightened out vis a vis the machines he needs and the PEG feeding tube he may need to have placed earlier than strictly necessary, due to his respiratory weakness. Finally, I found out where the BiPAP (bi-level positive air pressure) machine was to be supplied from, as well as the portable suction one and the cough machine (called an In-Exsufflator) and had Joe call them. Well, finally some results. They knew just who he was and were right there ready to make an appointment to come out to the apartment and get him set up, today if he'd wanted it. Instead, he had to opt for Monday, which is when they are coming, at 9:30 in the morning, when all three of us will be there to learn how the machines work, just in case we are needed.

As to the PEG, or Percutaneous Endoscopic Gastrostomy, this means, so far as I can reconstruct from the words, a hole in the stomach made via endoscope and going through an opening in the skin. In other words, PEG is a tube that goes from the outside of the abdomen directly into the stomach, and through which is poured various liquid food supplements or substitutes, depending on how much if anything the person can take by mouth. It is not that Joe cannot eat any more, or has too much trouble swallowing; if anything, a barium swallowing test today said he compensated well in general for his weakness. But his respiration is so compromised that at some point it may be too low for anaesthesia to be safe, and then it is doubtful they could do the procedure. I have read that it can be done under nothing but local, but this means being fully alert while having an endoscopic tube passed down your throat into your stomach, and I don't know if Joe could tolerate that. Maybe he could, but I don't know...

So we are trying to find out at what level of respiratory capacity the PEG placement becomes imperative, and whether Joe is at that stage now. But no one is answering this question, and I don't know why. It seems a simple enough query to answer, doesn't it? Yet they keep on throwing information about PEG at me, when I know what PEG is, I just don't know at what point it is necessary respiration-wise. The only thing I can think of to do, is to call his pulmonologist on Monday and ask him, go around the Clinic altogether!

It has been a too busy day. We went to the radiology clinic this morning, for Joe to have that Barium swallowing test, which took an hour and a half altogether, including the hour's wait beforehand. Then we drove home to pick up my pills, Then Joe wanted to go out to lunch, which I dreaded but did like a good sport, and ate, like a good sport. We had lunch at the "best Indian restaurant in Connecticut" according to some critic, only because it happened to be nearby and had a buffet. Then we drove back to the hospital and went to the pulmonologist's office and waited there...Finally saw him, a very nice guy it turned out. Joe liked him immediately and so did I. He is writing for Joe's pulmonary function tests etc from the Clinic and will wait to order any further tests until next month, after he sees the records. So finally, by 4:30pm we were outta there and on our way home. Luckily, I didn't have to drive, as I was zonked. But I can't even imagine how Joe was feeling, as he needs 12 hours sleep at night, due to the Zyprexa, and had only given himself 7 last night, I don't know why, of all the nights to stay up late!

But home I am and home I am staying until 11 tomorrow morning, when I have to get up and go to a real salon to get a real -- as opposed to a self-done chop-chop -- hair cut. This time I'm going short but good! BD

Posted by pamwagg at September 29, 2006 07:21 PM


Hi Pam, just writing to let you know that i'm thinking of you and joe and hoping for the best. Glad to hear that you ate at the Indian rest., even though you weren't happy about going. it does seem like such a simple question...the question about at what point is the PEG thing imperative. wonder why they can't give you a straight answer. sometimes i think people in the medical profession have difficulty answering questions from educated persons and automatically assume that they are uneducated about the subject at hand and have to answer with very basic answers....stuff you already know. i guess the best way to handle that is to ask it again and again until they understand that you understand. (hope this doesn't sound too negative!)

take care, pam. hope you have a restful sunday. send my regards to joe. love, sue m

Posted by: sue marasciulo at September 30, 2006 08:27 PM

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