Well 20 years ago, we'd just arrived at our wonderful hotel in St Lucia - blue skies, blue sea, sun, palm trees. Tonight, we'll be spending the evening in front of the TV (catching up with Downton Abbey if I get my choice. Michael wants to watch Nathan's Bar Mitzvah dvd which we only just got back - too much emotion there and I'm not sure if I want to spend the evening in tears), just the two of us. The kids are round at friends celebrating but as much as we love our friends and their kids, too much risk of catching germs, so it's just the two of us and Waffle.
Michael had a hair cut yesterday and looks soo much better. Shame he's not feeling it though - bit of a tummy ache all day. No point in asking why, cause who knows?!? He has been doing ok with food, although he does still treat me like the ogre when I place a plate (always a small one) in front of him. Yesterday he managed a small piece of chicken and a roast potato; today we had a snack lunch as we'd had such a late breakfast (actually, I've just realised he skipped breakfast). I split the remains of Lauren's birthday cake between him and Lauren. Cannot describe the look on his face but the 'uh' said it all. We had tea at Michael's sister, although he refused the rolls and went for crackers instead (can people become addicted to crackers?). Maybe the only reason he's just told me that he's had a stomach ache all day is to preempt his refusal of supper.
My task when the kids return back to school and we go back to some order of assemblance is to ensure he starts eating more. Because I was out the house this morning whilst he was showering, by the time I got home I didn't think about breakfast and naturally, neither did he. In the usual Michael way, he's very happy with his tube feed - it's easy, no chewing required. The Nutritionist did ask last week how many calories he thought he was eating - honestly have no idea. Wouldn't know how many calories in a slice of chicken, or a piece of birthday cake, a slice of smoked salmon. Michael's writing it all down and I assumed the hospital would work out what the daily calorie intake was. I have no idea what they are aiming for before they can start to reduce his feed.
We're still trying to work out whether it's the feed that's increasing his major stoma output and the hospital have suggested he puts the feed on slightly later and sees what the effect is. Last night we were at friends for supper. Shortly after Michael attached himself to the feed, he had to make a major dash to the loo as he said his stoma was streaming out. I sat round the table with our friends trying to work out why this would happen (everyone's a Doctor!!) - we deduced that it obviously wasn't the feed itself as there was more out put than input. Perhaps he's now suffering with irritable bowel (how cruel would that be) - but our final diagnosis???? Absolutely no idea. Meanwhile, Michael dealt with it all very calmly - obviously makes a difference when you're with friends. Sure he wouldn't have felt the same if we'd been out at a restaurant or in a meeting (and he won't be for some time!). 7 weeks ago he couldn't even look at the stoma and now it's become dinner conversation.
I have to change Michael's Picc Line dressing each week and clean the area. It's been a weekly event for over a year now - first with his original Picc, then his Hickman and now with the new Picc. Removing the old dressing is quite painful although less so that when I had to remove it from his Hickman which was on his hairy chest. I've now got to flush his TPN line (Picc is split in two - one for his drugs and the other for the TPN which thankfully has never had to be used) with Hepsal which stops any clogging up of the line. Michael does all his drugs himself so it's been a while since I've had to administer anything - little bit out of practice. Changed all the dressings and then filled the syringe with the Hepsal. Minor fault, forgot to take the needle out (obviously I'm not injecting into his skin so not needed) - although I would have obviously noticed when I went to inject. Michael was not happy with my faux pax - he's getting really good at giving me 'the look'. I calmly took the needle out so I could carry on with the injection but I get the feeling he'll be watching more closely next time. He's so not as laid back as he used to be - I've become the calming influence (and that's quite something). Michael is definitely more panicky - worrying about every little change (and error made by his wife!). I do seem to spend more time trying to reassure him. Perhaps I'm just getting to realise what there is to panic about and what we can ignore (or maybe that should be panic less about rather than ignore).
2011 has somewhat of a rollercoaster:
The beginning of January we were expected to carry on our lives as normal (Michael feeling sick all the time, on tpn and not able to work).
By the end of January, having sought a second opinion in New York, we were on the road to bowel transplant.
February took us to Oxford for an initial consultation. We went very apprehensively, believing there was no way we'd every have surgery anywhere but the States. Having been completely bowled over by the Surgeon, it looked like transplant (if approved) was going to happen in Oxford.
March was the beginning of it all, with provisional tests.
By June, we knew it was a 'go' and we just had to wait for confirmation on whether Michael needed a new stomach and pancreas as well.
July was a real break from it all with the wonderful celebrations for Nathan's Bar Mitzvah.
August was the most amazing family cruise to celebrate my parents' 50th.
Back home, confirmation of bowel only - then on the list and 'waiting'.
8 October 2011 - the true rollercoaster began.
To you all, we wish you a healthy & happy New Year.
Let's see what 2012 brings.......
xx
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