January 01, 2008

Many rivers to cross

Segev's been sick for a week now. Ten days after the antibiotics were to have done something he was sick again with pneumonia as though nothing. The last few month something has changed again. His sleep pattern is different, his seizures more severe and when his bronchiectasis acts up and develops into pneumonia, his temperature doesn't reach the highs that it used to. 
Actually he has maintained a temperature of 37.7 for one month now, with his regular being 36.6. He has been complaining quite abit with pains in his abdomen and his bowel habits have become less regular. Each and everyday he receives special massage just for his abdomen and of course the prescription of traditional Chinese medicine against intestinal adhesions which i put together over a year ago. 
So the last month especially has been fubar. Now he is really sick. I just finished a 63 hour shift of taking care of him by myself. Constant physio on his chest, including massage of eucalyptus oil; inhalation therapy with bronchodilaters as well as just 20% saline., incessant suction of phlegm. Maybe fifty times a day. Food, medications, helping him with his bowels. There is rarely a moment to use even the bathroom. I couldn't shower for two days.

Today was a torture because i had to decide what to do for him. I tried antibiotics through infusion. I tried injections. what is left but hospital? I tried six months of inhaled antibiotics. That didn't help. I've always thought a combination of antibiotics might succeed where single therapy didn't. Augmentin and inhaled Gentamycin didn't help. I did some more research, re-research actually and think that Cipro, which is contraindicated but which he has taken very often before, together with Augmentin might do something. 

I went to X, one of two regular doctors at the clinic. He's a good man, always listens, knows what he's talking about. He agreed to my proposal and today...well, here we go again as they say. I think that the only inevitable thing is that which you know. And if i know that it won't work so then why try? The only inevitable thing is that which we don't believe in. I'm not trying to sound deep here, but that's how i feel. I may be sliding down a slippery slope but all i see is what's in front of me. My purpose to keep on going. I know i'm stupid in it. Often in a card game, or in Backgammon, when it is already clear the outcome i want to continue playing; play it out to the end for its own sake. To the end.

I'm definitely more tired lately, and feel the need to sleep. Then again i have been living off of five and a half hours for a few years now. Well, i didn't start out to make this post about me. It's to put things down for Segev because he is the one who needs help the most.

Every little detail is important with him because all those details together define his experience, his well being. If he is sitting in his chair it has to be perfect, he must be comfortable because he cannot reposition himself or complain about anything specifically. If his shirt is riding up on his back, or even there is a fold out of place, applying pressure, it makes a deep mark on his back and further hinders his very poor circulation. His feet are always cold as ice, except for deep into the summer. His heating blanket is thrown into the microwave ten times a day to help warm his feet. 

The wheel chair i had built for him is based on a standard platform but with so many modifications that the technicians simply couldn't keep up with the rationale and plan and execute based on their know how and finally i just told them do this, this and that and they did it. Special pillows and supports, straps and wheels; everything was an essential detail. After I received the wheelchair i still made close to ten adjustments or plain alterations because until you put it to serious use you cannot know.

But all those details which fill up the day doesn't amount to much when Segev gets sick yet again. And each time is, well just how serious is it? Are we going to get through it this time? Do I need to call it quits? I hate doubts but fortunately i don't have many where Segev is concerned. Now if only my personal problems were like that.

O! Sun, what winter woes has casts its shadow when luck will crawl and be done with hope. Cast a chance and luck will prevail, for good or for bad, cast that hope and cherish that hope.........

Let's take it slowly, day by day and see if Segev reacts well to the antibiotics. Tomorrow is a big work day for me, not easy but at least outside and out in the world, that other world that occasionally i glance.