Referral for transplant assessment

We were at clinic this afternoon. Soon after coming into the hospital, I bumped into one of the play specialists and learned that another of the gastro children died on Easter Sunday He was 18 months old. This child had so many problems it was amazing he lived as long as he did. A real fighter. That is 8 gastro kids that have died since we have been in this world. It is so sad and scary. My thoughts and prayers are with the family. We shared a room with them for several weeks during William's last admission.

I also learned some good news in that one of the other children who was not expected to come off TPN is doing so well that she has weaned right down to IV fluids only and may well be free of lines in the near future.

William had an ultrasound today. The report was not ready in time for clinic and the radiographer was not saying much except that his spleen is enlarged enough to be obviously so by eyeballing the scans. He actually has a bulge from it. All this will be fed back to Birmingham. William's consultant is keen that he goes for his transplant assessment in the near future. He is not sick enough to go on the list yet but it would tell us all if he is suitable and, if so, what the parameters to go live on the list would be for him. It will also tell us if we want to put him through it. The current prognosis is 50% chance of survival. That has actually gone down since Paul and I went to Birmingham for an initial chat about transplant. They have not done many small bowel transplants in children and the stats change according to outcome. The assessment will involve 2 weeks at Birmingham Children's Hospital where Wills will have loads of tests and we will have lots of counselling sessions and discussions so we can make our decision as well. It will be very intense.

Wills is OK but still losing too much fluid through his bowel. So, we are going back to our chelsea pad next week to try a new drug that will be given via a subcutaneous line. He tried this last time but had a reaction to it. However, it was given IV through his central line so we are going to see how it goes subcut. Of course, having had a potentially allergic reaction previously, this has to be done in hospital. If the drug works, we will try to challenge his gut again with a little diarolyte. We will only be in Monday - Thursday so it won't be too bad. The girls are away at their Dad's so it is a perfect time