I had to leave a bit earlier today as I had to pick up Lauren from school as she was playing in the football team. The score couldn't possibly be worse than their last game (7-0) - and yes, she found her football boots.
When I left, Michael's feed had not yet been put up. He had discussed it with the Nutritionist and it was agreed (under sufferance) that it would start at 20 ml per hour and hopefully, depending on how things go, increase by 10ml per day. The Nutritionist has always said it's all got to be with Michael's agreement but if he had his own way, he'd start at 1ml and increase by a further 1ml a day. We both tried to encourage Michael by showing him how much 10ml actually is - about a small gulp of lucozade (which he happily takes). It's obviously a real fear for Michael as he is so worried about being sick - and she is fully aware of this and that's why they'll take things slowly. This really is nothing unusual. As I've said before - his citrolene levels are really good which means his intestine is ready to start absorbing things. I'm hoping when I get there tomorrow that he'll be coping well (really really hope).
Sometimes I ramble on expecting everyone to clearly understand everything. A friend asked me which part of Michael's intestine he actually had transplanted and what original parts he's got. Basically, he's never had any of his large intestine removed, it's always been the small intestine and after last year's ops he was only left with 70cm (the average length usually being 6.9m). In the transplant op, the hardest thing was to remove the small intestine which was a hard mass which was never ever ever going to start working again (so much for being told after last October's op to 'go home, carry on your life and maybe things will start to work again!). They then had to remove a small part of the large intestine so the new organ would fit in. Please feel free to ask anything else I haven't clearly explained :)
We did manage another walk before I left. I was pleased to leave the warmth of his bedroom - felt lovely to be in the cool corridor. Michael though was freezing. As we walked along the corridor, you can't help but look into the other patients rooms and just see how everyone is progressing. There are some funny sights and I guess when people walk past Michael's room they've seen him do some odd things (remember the fan on his backside a few weeks ago?') - obviously I wouldn't dream of sharing any of these funny sights - you know, patient confidentiality!!! Although here's a teaser for you - a sign on someone's door 'sips only by door' - any ideas what that one could mean?
Michael's been hounding me for the last couple of weeks to see if I could bring him a dvd up of Nathan's Thursday morning Bar Mitzvah call-up. I'd put it onto the computer ages ago, with some music - have to say I was most impressed with my handiwork. Putting it onto dvd was another thing. I've tried it in the past, downloaded various things from the internet that promise to easily transfer movies to dvd - but these things are never as easy as they seem. Anyway, at last I managed to do it, tested it on our dvd and it worked - fantastic. While I was in the flow, I also put a dvd together of the kids singing at Aaron's Bar Mitzvah. Well I'm not so sure it was the best idea but Michael had been hounding me. The tears welled up as soon as it starting playing and I knew it certainly wasn't because he was amazed at my talents. Michael's generally a very emotional person and that's just exacerbated at the mo. I think it was tears of happiness to watch it all again and definitely tears of frustration that he's where he is now. Up until then I think he was in a brighter mood. Tomorrow I think I'll encourage him to watch his favourite West Wing instead.
I really am hopefully that this whole feed going into the intestine will be a positive step forward - and now that they've found these ulcers and are starting to treat them - that things will start moving in the right direction which in turn will make Michael a little more comfortable and more importantly confident that things are progressing.
We'll see what tomorrow brings.
xx
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