I start off thinking 'oh I feel bad for writing this whingy whiney blog that has turned from something so nice into something so maudlin and lonng' - but then I think 'my blog, my rules'.
So, I'll apologise in advance. It's whingy. Again.
There is some good news today; we are now on a critical list for a transplant (which is not quite *super* urgent - I figure Saturday night he'd have been 'super' urgent given he was 4/5ths dead because that's the system!) and whilst he is still in ICU; they are starting all their testing for their profile for the transplant. He is now under the 'LTU' - Liver transplant unit and no longer fucking around with gastroenterologists who want to 'see if this works' or liver specialists who are completely fucking blase because they are sure he's drinking and we are just fuckwits who don't know any better...
They have told us 'early in the new year' which I, at first, thought to mean April/May (it is the public system after all); but when they started gung ho profiling - it might be earlier than that?
But I digress. He's in ICU more for the machines now than for him; the oxygen levels in the wards don't go as high as the ones in ICU; and the team want to have a bit of leway if something goes pear shaped quickly. So, he's in there on a lower setting; but because of the lack of stabilisation, he's still getting sedated (twighlight I think they called it? and no, not the vampire) just to keep him calm enough to stable him. Once they are confident about the stability and the lack of oxygen, they'll throw him back up to level 8.
I'm in a whole other place with this at the minute. I am not hoping; but I am not pessimistic either. I am not speculating in any way shape or form anymore - because the roller coaster is bad enough; let alone adding to it by 'maybe or might'. We just do not know if he'll A. make it TO transplant; B. whether he is a candidate for transplant (high BP,diabeties and the kidneys which could all be liver related, but is a question of chicken or egg) or C. Whether he even wants a transplant. He bounces between the two, depending on the day; but the psychiatrist saw him today and hopefully seeing him will at least set him right in his own mind.
I have no opinion one way or another. If he doesn't want the transplant; how could you blame him? He has had 3 'good' weeks this year - all spaced out in individual days and all 'good' enough to go to the supermarket. Awesome. I don't know that I would want to keep going either. And I am starting to be at the point where I don't need him as much as he needs this to stop IYKWIM. I am starting to feel cruel.
But, on the other hand, if he wants a transplant, then I'll be right there with him. Duh.
We got a massive book today with regards to 'transplant and you - what to expect' type stuff; they had about 4 pages of quotes from past patients/families. And it was ironic that today was the most alone I have felt for a long time; reading these quotes and reasonating with so many of them; made me feel A. less alone and B. Less freaky.
The beautiful beautiful Jayne lost her father today. I think of her often and wonder whether she feels similar; or whether it's just me that wishes sometimes that he'd just die and stop torturing himself this way. I'd love to sit down with her one day, when it's all done and dusted for both of us, sans kids, with lots to drink. One day.
Tomorrow my sister, mother and I have a counselling session of our own. I have no idea what to expect; but if it's anything like the first social worker, I'll just about punch her. After 6 attacks, we see her and she's 'oh here's a booklet'. Well we fucking HAVE that. 'oh well, you're managing beautifully' - as the crazy man looks for his dead father. But I have no expectations of tomorrow; it's such a long time away.
We started off weeks by weeks, then day by day; now we're morning by afternoon. Soon, I am starting to think, we'll be hour by hour.
Obviously he's not home for Christmas this year, which is killing him; but until he can be stable he cannot leave. And he's not out of ICU yet, so there is no hope they are going to let him out of ICU tomorrow and then home for a few hours. But, again, who knows.
Wednesday, December 23, 2009
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