Day 8 - A very intense day

Paul was up today so we had 3 information sessions with the liason nurse so he could hear the main points. We also met with the consultant in charge of the transplant programme. William had the CT of his veins today. This was encouraging as they found there are more potential line sites than we thought. I hope this means we can get rid of his current infected line now and can't wait to get back to Chelsea so it can be sorted out. He was a lot better in himself today but still having little temperature spikes and it not totally himself.

With the knowledge that there are more line sites available, William's transplant assessment is much more open now. I find this very frustrating as we have heard so much about all the positive things of transplant for him and it now looks unlikely it will be offered to us. I don't understand why, if it all hinges on one test, this couldn't have been done in our local hospital or as a day case here. We have heard so much about how William's life could be transformed by a transplant that it seemed a risk worth taking. The results of his assessment are:
1. He does have intestinal failure and will remain totally TPN dependent for the foreseeable future. His proximal small bowel (the end closest to his somach) moves OK but seems not to absorb anything. Thee distal bowel, further along, has little or no peristalsis and is dilated. It is likely this section that is causing his almost incessant line infections.

2. His liver is cross but not irreversably damaged (yet to be confirmed by biopsy results)

3. He has lost some line sites but does have a few to use for TPN

4. He has a static neurological disorder, leading to a degree of physical disablity, but it is not degenerative.

5. He has recurrent line infections and has had a bug in his line throughout the assessment period.

The main indications for transplant are liver failure and line access. According to these, William could continue on TPN. However, some papers list recurrent line infections as an indication in their own right. This is our main concern, and the main concern of our team. We were told William needed a transplant assessment because he was still getting recurrent infections after his illeostomy and all attempts to feed him in the gut have failed. He could still be accepted for transplant on these grounds but it is not so clear cut. You need a crystal ball to predict if he will die of a line infection or could die of transplant complications. The consultant here did suggest that we could remove William's distal bowel to see if it reduced the infections. Paul and I don't want this though as it would be a huge operation, also involving moving his stoma, it would give him 'short gut syndrome' and it may not even help. He is going to talk to our consultant to see what she thinks and is going to then talk to the team on Friday to see if they think his frequency of infections is enough to recommend transplant. He did say that he is likely to need it sooner or later anyway as his liver is likely to fail eventually and he will then need liver and bowel. I strongly feel that the combination of organ failure and recurrent, life threatening infections is enough for him to be listed. Anyone who has seen their son, on more than one occasion, playing happily with his toys and lying on the floor blue with septecemia five minutes later would, surely, feel the same. Especially when infections with the potential to cause this, and so much worse, are occuring almost every month and it is taking several weeks or more to get over them. I know it is a huge operation with life long implications and a big risk but, on balance, I think it would be so much better for William to be listed for an isolated bowel now. It is a non win situation in many ways because if he isn't listed and we loose him to a line infection it is the wrong decision but if we do go for transplant and he doesn't make it it was the wrong desicion too. We really do need a crystal ball. Likewise though, if he has a transplant and does well it was the right decision. Things can only stay as they are if he is not listed. There is no wonder treatment to make his bowel work again and no realistic treatment to stop the infections that are making him so dangerously ill so often. It really feels like we have seen a way to at least give him a chance of a safer life but that the door is about to be closed on that possibility.