"Reading the CBeebies listings - he has this pretty much memorised now!"
Another great day. I really think we have turned a corner now but have learned not to take anything for granted. William has been playing all day and even mobilising a bit around his room. He is feeling much better in himself now and is getting back to his normal self. He is now on 5ml per hour of feed, a special recipie used in the first few months after a small bowel transplant. So far, he is tolerating it well. He is still losing too much fluid from his stoma so increasing feed will be gradual and carefully monitored until this settles down. There are no plans, we just take each day as it comes. He will remain on full TPN for the time being until the feeds are established. I can't wait for the day we take down his last bag of TPN. Once I knew we would not be home for Christmas I began to dream of being off TPN by Christmas but I know it isn't helpful to set such goals. One of the areas in which I have grown as a person through all of this is in learning to just live for the moment and take things as they come, rather than storming along and planning what comes next all the time. I hope I will take a bit of that on into the rest of my life.
I met with the consultant who oversees all the small bowel transplant children today. This is something that will happen on a regular basis. Ward rounds tend to concentrate on the immediate issues of the day. The meeting is to share an overview of what is happening and enable questions. It was a really useful time for me to learn how William is doing, what his successes are, what concerns there are and the immediate plans to deal with them. The swelling William has experienced in his stoma is something the team have not seen before. We don't really know why it happens but the fantastic news is that all his biopsies have been normal with no rejection so that is not the cause. It is a lot more settled now and is working more consistently so I am happy. All in all, William has had his ups and downs but we are hoping now that he will progress steadily along. No more snakes and, perhaps, no ladders either - just square by square, nice and gently until he is stable enough to come home again.