A lot of poeple have 'visited' today. Transplant doctor; stoma nurse; infectious disease doctor; phsyio; nurse; coordinator...... Was just a continuous flow.
Michael's temp still spiking, although seems to slowly be coming down. Still getting the hot and cold flushes which are particularly bad at night and stopping him having a comfortable sleep.
His feed which goes through his peg (into stomach) is now up to 25ml per hour but that's going up to 30 today. In fact as I write Michael's trying to negotiate with the nurse having it increased later rather than earlier. He's nervous it will make him feel more sick.
Now that he has no Hickman line or main line, he has no easy access points for his drugs,etc. His veins are terrible - one cannula has already blown and the second one which went in on Friday is about to give up. It's not unusual when so many drugs are being put through for them to stop working. Apparently, certain drugs are more painful when they go through. Diazapan is the painful one at the moment - he'll now be trying to take that orally. Ideally they'd like as many taken orally as possible to protect the cannula. Michael's already taking his anti-rejection (5 of them) tablets orally and is a bit worried about taking too much. May also have to have some of them IM (in the muscle!).
The infection seems to be fairly under control. They're aiming for him to be on his present antibiotics for another week (14 days in total) and hopefully that should kill all the bugs. Nothing been growing from recent blood cultures which is positive news.
We had a walk along the corridor. Michael managed a bit further today - had his rest at the end and then we made it back to the room. While out of bed, I treated Michael to a long awaited hair wash. I reckon his last one was nearly 3 weeks ago. Latex gloves on and I was happy to oblige. Quite a bit if shampoo later and Michael had clean, shiny hair and definitely felt better. He even managed a shave and a good wash and was then exhausted and ready to climb back into bed.
No chance of sleep as people kept coming in. Michael then had his stoma changed. At the moment, and it is early days, he's not coping well with that. Really hates the idea of something that should be inside, being on the outside. I've amazed myself and really don't find it as bad as I thought I would but then it's not on my body so it's hardly the same. The stoma nurse was saying that some people never adapt to having one and find it difficult to cope with. I did suggest to Michael that perhaps when he starts dealing with it himself, he will be more accepting. The positive is that it is only for a short period and hopefully in no time at all will be reversed. It's just upsetting to see the look of disgust on his face when the staff are dealing with it.
Michael is having a well earned sleep now. I've only got 20 mins until I leave - I know he'll be upset if I leave without saying goodbye but it would be a shame to wake him :(
Don't want to be home too late for the kids. Also want to pop into the supermarket on the way home and see if I can find some things to entice Michael to eat. So far, anything I've suggested has been met with a firm 'no'.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
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