Today was not a good day. Michael's been feeling extremely sick, still having hot/cold flushes and generally just not feeling good. The antibiotic which was making him feel sicker has not been replaced yet, although I forgot to ask him whether he felt less sick since not having it. I think perhaps not as the sickness is really getting him down. He's had a very low day although the Transplant Coordinator did try and cheer him up and took him out to the cafe for a coke. I have visions of wheelies in the wheelchair along the corridor!!!! The whole transplant team are amazing - such a personal touch. Being such a relatively new operation, and with such a great Team, it really does feel like your part of a very special club.
His stomach feed has now come out to hopefully alleviate some of the sickness. It was agreed to give Michael and his gut a complete rest. Not sure for how long - think they'll keep assessing. In the back of my mind can't help thinking that at some stage they'll say he needs another line in so that he can go back on tpn to give him nutrients/calories (not that I'd say that to Michael). It's not that there's a problem with that but it would be a shame to have to go back to it. Now when he has his stomach aspirated (drains the fluids that the body produces and which aren't been fully absorbed), if it's more than 200ml he has to have it pushed back in otherwise he won't be getting the electrolytes his body needs.
Michael was at a very low point when I arrived. Very tearful; missing the kids terribly - although I did remind him that once he'd sat at the table with them for one meal, with all their niggles and petty arguments, he'd realise the peace and quiet is easier! I think tonight he was wishing he could have gone back to Nathan's Barmitzvah. It's so hard to cheer him up - tried the 'be positive; look to the future', etc but the reality is when someone's feeling so low they don't really need you to say anything. I felt so useless - with everything Michael's been through, it's not very often I see him like that. He was saying that he's never found anything so difficult and apart from the sickness, his body is exhausted.
As bad as he felt, we did have a short corridor walk. Not attached to any drips today so drip stand free. Great I thought but forgot that he usually uses the stand to prop himself up. That's where I came in handy! Tried holding hands first but I just couldn't support the weight he was putting on me (sort of dragging my hand down). So we did the 'support an elderly person' walk. He really used me as his support and I think the walk was as difficult for me as it was for him. Hopefully that will have tired him out to encourage sleep.
We have a day trip out to the John Radcliffe tomorrow. Needs to have an ultrasound to check no fluid near the heart (the dreaded bug again). If clear that's it. If not, another test - not sure what.
So tonight I'm back at the flat. The kids may not have been thrilled that they were shipped out again but they've definitely got better accommodation than me. I've got flat mates as well. Nice people - their sister/mum just had bowel transplant. So it's a full house. Not ideal sharing a bathroom and toilet with strangers. Its great having the flat to stay in but........ Quite funny, the three of us were discussing how the flat really needs a makeover (as well as a deep clean). Whilst writing thinking maybe I'll contact 60 Minute Makeover? Could be that Michael and this lady are both recuperating in the flat at the same time - think that will be hard as there's no living room and it means spending a lot of time in the bedroom (obviously their own). Not even anywhere in the kitchen to sit and eat. It's not like it's summer and he could spend a lot of time outside (although our summers don't necessarily guarantee that). Guess they didn't expect two transplants to happen in such quick succession.
Time for sleep. Don't want to oversleep in the morning and miss our trip out!
Night xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
That was a grim blog post. I wish i could do nmore so heaven knows how you must feel. Anyway, have not got anything inspirational to say but just had to send you both my love. Grand slam tennis is a 5 set game so even at 0 -2 down there is still plenty of scope for a rally and come back. I am hoping this will be the case for Mike. Probably not even in the second second set yet it is just time goes slowly when the news is not good.
ReplyDeleteLove.
Hilly