A Very Long Snake

If you've been following this blog for a while, you'll remember how William had a fair few ups and downs while he recovered from his transplant and how I likened it all to a game of snakes and ladders. We had a nemesis snake every time we tried to turn his feed above 15 mls per hour and became more well known than I would have liked in X-Ray and Theatre to identify and fix blockages. When you go for transplant assessment, it is made very clear to you that transplant, although a wonderful, life saving thing, is not a golden panacea and that having a transplant is swapping a set of chronic medical problems for another, all be it a less dangerous and immediately life threatening, set. Sometimes, it is all too easy to forget that that game of snakes and ladders goes on throughout life after transplant. We've just had a bit of a reality check and have hit a very long snake indeed, one of those you land on when you think you're home and dry in the game and that takes you all the way back to the first line of numbers.

William had his stoma revised in April because it had prolapsed. He'd never been right since then and seemed to be losing a lot through his stoma, especially after his special milk shakes (scandishakes). His weight had stuck a bit and I was concerned but not too worried because he seemed well in himself. I did have the feeling we may be facing a hospital admission before too long for a review and, perhaps, a change of feed. What I wasn't expecting was for Wills to wake one morning looking more dreadful than I've seen him since his transplant, white with dark rings under his eyes and floppy. I called his Dad who, luckily, wasn't at work and we took him to Chelsea and Westminster. He was very dehydrated and his stoma was pouring. Tests showed he had a lot of sugar in his stoma fluid, indicating he wasn't absorbing much at all and his blood sugar levels were low, even after a milk shake. I was worried he was rejecting his bowel and I wasn't the only one.

The next day, tests came back showing he had rotavirus. We all breathed a sigh of relief and he was started on immunoglobulins (factors in the blood that help fight infections) into his bowel to help him combat the bug. Things didn't settle and, as rotavirus can cause rejection, we were rushed by the most stomach churning blue light ambulance ride to Birmingham Children's Hospital for a scope and biopsies with the concern that he was rejecting. Thankfully, all the tests have shown that William has not had any rejection. It's always a relief to rule out the 'big R' but it's only half the story. Infection is another big worry after a transplant, especially infections that directly affect the transplanted organ. Wills had rotavirus but the team feel he has had another, probably norovirus, from about the same time he had his surgery and that his bowel has been grumbling about that before the rotavirus tipped it all over the edge. His bloods were the worse I have ever seen them to be, such a worry when these viruses, although nasty, are pretty normal and, even more worrying, are everywhere!

That snake really has taken us to one of the very first squares. Wills is back on TPN (the IV artificial feed he depended on before his transplant) while we wait for his bowel to be ready for feed again. He is having 5 mls an hour of the simplest of feeds, an 'elemental feed' made of nutrients at their very simplest, single molecule state. We'll wean it up very slowly and wean down the TPN but have a long way to go to the 50 mls per hour William needs. It was upsetting to see him back on TPN and see that white line in his chest again but he's lost 3 kg and needs some nutrition. It's even more upsetting to be away from Hope and Ellie for a prolonged stay in hospital again.

I am trying to remind myself that, although back to the start, we are still on the board. This is not William's own old bowel. This is a healthy bowel that looks great on the endoscopes but has just got a little unwell and needs some time to recover. I just hope we don't meet our nemesis snake again on the way back and struggle to get past that 15 mls per hour!