Saturday, May 13, 2006
We spent a very long day in clinic yesterday. I had a sneaking suspician that William's jejenal tube had slipped out of place. I asked for an x-ray yesterday and Mummy's intuition was right! His tube had slipt back into his stomach. At the moment, he has a tube threaded through his gastrostomy. He reacts badly to stuff in his tummy so that could well be why he has been draining 100s of mls of bottle green yuk from his gastrostomy and why he has been in pain - I hope this is the explanation for it all anyway. He had his tube reinserted but it isn't a very nice experience for him. We are only giving him a few mls of medicine so it isn't the greatest of signs that such small volumes in his stomach caused such extreme symptoms. They commented that his guts are all pushed over to one side because of the previous surgery and the gastrostomy. I often think that there is no way his guts can be working properly - even if they had been - with such changes and not being used for 7 months, surely they would have atropyed by now!
It is getting more and more likely that William will have to have a laparotomy and illeostomy soon. This will be a huge op but will make him much more comfortable as all the liquid stools are now pooling in his system and he has a big dump of it all (which is spectacular!) but the pooling causes pain and discomfort and can cause backflow into his stomach. None of this can be done until the tests at Great Ormond Street as the information gained will help guide the surgery and what needs to be done. They only want to do one big op and get it all done because of risk in any future transplant.
One glimmer of hope - the consultant told us there are still some diagnostic stones unturned - one is that it may be an inflamatory condition that steroids could help. This is not really expected but any glimmer of hope is well worth holding on to!!! Of course, no-one would say for a second that one course of steroids and he is cured but at least they may help. However, nothing can be done until the tests at GOSH so I really must phone again on Monday and see what is going on.
William is still getting dehydrated in the heat so needs more fluid in his TPN. We may be able to get back to a 6 hour break again then. It is funny how artificial TPN feeding is. William put on a lot of weight due to the TPN but is still very short. He now needs to "grow into his weight" as the consultant put it. So, for the next 3 months he wants him to stay the same weight but grow in height. It is strange how controlled everything can be on TPN!
William stays happy as usual. There will be some tough times ahead but I know he will be smiling again so quickly after the painful surgeries. As soon as he goes into GOSH it will all be kicked off again and there is no knowing how long he will be in hospital for againl. That's what I hate the most - the lack of control and a feeling that his life is amost owned and controlled by someone else and when they say now we have to do what they say and put the rest of life on hold.