Hospice

We met with our nurse from the hospice today. It was a good meeting and they are offering us some excellent opportunities for respite and to get involved with sibling groups and toddler groups and other things where we will meet others in the similar situations. They even have other families with similar complicated bowel and intestinal conditions with no clear diagnosis on TPN and waiting from bowel transplants - just like William. That was really good to hear as I don't feel so much like we are the only ones with no clear answers any more. The intestines and bowel are so big that there it is like finding a needle in a haystack sometime as the problem could be anywhere along several feet of muscle and nerves. They have characterised William as having a life threatening condition due to the nature of his treatment. This was a bit of a shock to here as we were thinking he fitted the life limiting description. That is all it is though, just a description. They are right though - his life is constantly under threat from infections and other complications of his treatment. His life is limited by long term effects of TPN and possible post transplant prognosis but is also under immediate threat. We had to discuss our resucitation plans which was a bit upsetting but, of course, at the moment we want active resucitation pulling out all the stops. He has already had to be resucitated with sudden septic shock with a line infections and was fine the next day so his immediate problems can be sudden and need a lot of intervention but he picks up. We will be reviewing this as his situation changes. We are all going to look around next week and have tea. All the families, children and staff eat together there which sounds lovely.

We have clinic tomorrow so we'll see how things are. He has had a stormer of a day as far as really horrible sludgy gastric aspirate and loads of similar stuff in the nappy goes with 3 changes of clothes before he even made it out od the cot this morning! He amused us by calling "Daddy" louder and louder before exclaiming "yuk!" as Paul went in to find his second pair of jeans covered! One situation I am more than happy for him to keep calling for Daddy in!!!