Cannot believe another week has flown by. There I was worried about when I'd get my next lie in, and I've already managed to squeeze 1 in!!
Last week was, as expected, exhausting. Les Mis was a fabulous show and I was very proud of Lauren being part of such an amazing production. The biggest shame was that Michael couldn't watch. I know Les Mis is not his idea of fun but to miss his baby on stage is so unfair. Meanwhile, there I was worried about how I was going to get her out of bed each morning and actually she wasn't too bad - I didn't cope as well. As there was absolutely no chance of me getting out of bed any later than 7am each morning, I did, for the first time, take Nathan to the stables in my pjs and dressing gown yesterday and then climbed back into bed until 10.30 am. Absolute bliss.
We had the busiest, but loveliest weekend and, as always, Michael was not able to join us. It was our dear friends' son's Bar Mitzvah and it was wonderful that we were all (of course, not Michael) part of both the Saturday and Sunday celebrations. On Saturday morning, I left Michael in bed, not yet ready to get up. I popped back at lunchtime, just to check all was ok and he was comfortable in his usual corner seat of the sofa, with phone, computer and dog for company! When I returned again in the afternoon - feeling guilty that he'd spend so much time alone, he was in his usual corner seat of the sofa, with phone, computer and dog for company!. Not sure whether he'd moved at all or not. Of course, everyone asked how Michael was and whether they'd be seeing him over the weekend and I repeated the same old story ...... 'no - too much risk of catching germs when so many people' and, in answer to 'how is Michael', the usual response of 'looking much better, getting stronger but insides doing very slowly'. Don't get me wrong, it's wonderful that so many people want to know how things are and care for us both, but my answers always feel so inadequate. The reality is, there's not going to be any major leap forward in how Michael's feeling from one day to the next. One friend said but 'you know he's improving, he looks so much better - think where you were a couple of months ago' but, in truth, Michael's internal problems, for him, don't feel much different at all. I'm sure if I could put our lives pre-transplant and post-transplant side by side I'd say what an amazing improvement there is but, to be honest, I can't.
Michael is really struggling with this whole feed thing. I'm sure if you were brave enough to read his blog on Saturday, you'll know the problems he's encountered (and if you have ready it, I apologise!!!!). This is exhausting for him and frustrating for me. As I said last week, we had all our questions answered when we were in Oxford on Wednesday but by the time we got home, we felt that we hadn't really progressed anywhere. I still really don't understand why Michael bloats up so much when he's on his feed. In my opinion it's like it doesn't get absorbed in the system, and collects like a filled up balloon. When he's going to pop, I'm not quite sure.
He's had two days off the feed, as advised, and today he went onto the new feed which they gave us. The positive was that he didn't have the usual outpouring that he normally gets when on the feed. I did initially think - yippee, maybe I shouldn't have been so pessimistic and maybe this new feed will be the change he needs. It's now 7 hours later, and the output has began to increase and he's feeling extremely bloated again. So I'm back to my usual frustrated self. I can't help thinking that perhaps something just hasn't kicked in and isn't working properly. Am I wrong to assume that if the bowel and stomach are working properly now, that food/feed goes in, goes through the system doing the necessary work and then comes out??? I understand that certain proteins may be too heavy to digest at this stage, so a soft diet is preferable, but just don't understand why the rest isn't working more 'normally'. Until normal happens, the sickness isn't going to get any better either. And so we go on......
The Nutritionist, who Michael is in constant contact with, has said if this new feed doesn't work, she has other ideas. I can also contact her at any stage, with any queries I have but at the moment I feel that perhaps I'm a little negative about the feed itself being the problem and I will therefore wait and see what other 'goodies' she's going to get Michael to try. I truly hope I'm proved wrong and that eventually, the feed will get sorted and in turn the bloatedness and other problems will be solved.
If only Michael could get more calories in him to get off the feed altogether. That's easier said than done though as with his limited soft diet, there's only so much he can eat. He is doing well though - porridge most mornings and then a selection of either omelettes, choc mouse, strawberry mousse, chopped liver, pates, yoghurts. Any other suggestions welcome please!!
Feel awful - just had a call from my daughter, in a blind panic as she's just jumped off the school bus as she realised she had an afterschool lesson, which I too forgot about. I have noticed that I just don't seem to be able to concentrate properly on anything and my mind jumps from one thing to the next. Normally I'm so good and reminding the kids what they're up to after school, but today I forgot to tell Nathan about his after school rehearsal but did remember in time to text him. Lauren? Completely forgot - perhaps if I'd looked at my phone earlier I would have noticed the reminder that came up and could have texted her so she didn't land up being so upset. Oh well - managed to calm the situation.
My mind has now (again) wandered off so rather than rambling (although I may have already done that!), I will say goodbye.
xx
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