It's been an odd few days with Michael having gone back into hospital. On the one hand his short stay at home was so quick, it's like he's never really been back. On the other hand, I don't really feel like he was ever back and we're just carrying on with hospital mode. Think though this time round is harder for the kids - they've had a 'taster' of Dad at home and now just want him back.
Today was difficult as only Lauren could come and see him in Oxford. Boys have both got colds and, yes, they would have been with him if he was still at home but to sit in the hospital room spreading all their germs would just be irresponsible of me. So we had a girls trip to Oxford. Michael's looking well but is clearly cheesed off. Today was his last kick of steroids. The high dosage is playing havoc with his joints. He's had joint problems for numerous years because of his long periods of steroid use when his Crohn's flared up. It's causing him major pain, particular in his knees. Apparently this is quite normal - even though when we asked what the side effects were from the 500mg steroids, we were told 'nothing'. The pain is generally just after having the dose for which they give him paracetomol. Hopefully now he's finished the 3 day course, the pain will go.
As expected, Michael won't be coming home tomorrow - that would just be too perfect. Of course I'm disappointed (again) but better that they keep him in until they are sure the steroids have worked and everything is improving. His tac levels are good and his kidney function has also settled but another scope is needed to see what effect the steroids have had on the rejection. Not sure yet whether they'll scope on Monday or Tuesday but, whenever, we'll definitely wait for the results before zooming off home. In hindsight, we really shouldn't have gone home before last week's scope (not that it was our decision). I know it would have meant that Michael wouldn't have had the two nights at home that he did but it would also mean that we all wouldn't have been so disappointed and frustrated. In a way, it's Michael that's finding it harder to deal with. He so loved being home, being in his own bed and having the kids around and now he's back in his lonely room.
Generally we've been told with rejection that the first signs are temperature and change in output from the stoma. You know Michael, he never follows the trend. He's had no temperature and it wasn't until yesterday that the output has changed - it increased yesterday, slightly slowing down today. I'm hopeful that perhaps because they noticed the rejection from the biopsy, before Michael got the symptoms, that it will all be sorted quite quickly. I think (so hard to absorb all the information) that Michael will either come home on a smaller dosage of steroids (about 60mg) or a further (as well as the tacrolimus) antirejection/immunosuppressant.
Most disappointing (although sort of obvious) is that this, as Michael's first rejection (and hopefully last), will put his 1 year clear back by 9 weeks. 1 year free of problems basically means we can relax a little more and that Michael should be able to have his stoma reversed. Episodes of rejection means the year has to start again. I don't believe this had ever been discussed before but once mentioned, it seemed (frustratingly) obvious. Also highlighted the severity of what Michael's been through and the path we have ahead of us. Michael should be home soon but it's not as straight forward as being home and carrying on as normal - well not quite yet anyway. Will we now always be looking out for signs of rejection? How scary is all of this :(
Michael's doing ok with eating. Not huge portions or anything, but definitely getting the taste for different things - not just chocolate. He had chicken soup today - didn't think it would taste the same out of a plastic cup, so we even took with us a nice bowl and spoon (Lauren thought I was mad). Had some home made salmon pate (thanks Mum) and crackers, obviously some crisps and some sweets. Whilst he was at home he also tried some salt beef (yummy but a bit heavy), some roast potatoes, trifle, butternut squash soup as well as the usual crackers and cheese. I did have to give him a talking to though - for the short time he was at home, if I mentioned food, he just thought 'crackers and cheese'. As much as I don't want to pressure him in anyway, without any encouragement he'll never try anything and therefore his calorie intake just won't increase. So, I decided the way forward was, particularly at mealtimes, to just place food in front of him and hope for the best. I just wish I had a camera when I placed the bowl of butternut squash soup in front of him - just assumed he wouldn't be having any and I'd given it to the wrong person. Not sure who's worse, him or Lauren!!! Anyway, once he realised there was no one else to feed, he did actually eat it and (I think) enjoyed it. Think this will be the hardest task for me - he knows the whole eating thing is 'mind of matter' and he does want to be a better eater - but it's not going to be easy.
So another week over - and a lot has happened. So much for our family Friday and Saturday night in. There's always next week.
Night xx
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