Friday, April 21, 2006


We went to clinic today and William's consultant is pleased that he is stable and his liver is still coping well with the TPN. His weight gain was really good again, but not too good this time so his TPN "recipie" is fine for now. We discussed the idea of an ileostomy some more today as it seems that is the way William is going. This would control his liquid stool output and stop it all building up and causing him discomfort, especially in the early morning. It would also help the build up of yukky liquid in the intestines that seeps and backtracks back into his stomach. This can hurt and make William wretch and feel sick. It seems an illeostomy is highly likely to happen, it is all a question of timing. Big ops like ileostomies can adversely affect bowel transplant outcomes so we really need to wait until his tests at Great Ormond Street and transplant assessment. If the assessment decision is to put him straight onto an active list he can live with a bit of pain and discomfort while waiting. If they decide to wait until his liver is more seriously damaged he will need the illeostomy to help alleviate symptoms in the meantime. It is all such a careful judgement of cost and benefit, timing and risk management. We are getting more used to it all though and life with TPN does not seem such a scary strange thing. We haven't had any line infection scares for 3 weeks and it has been so nice to be at home. We do need to chase Great Ormond Street though because, while it is nice to be stable for a while, these decisions and plans for the next phase of treatment etc do need to be made and are being held up. I will have to call them Monday.

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