Quick update while home to do the washing

Wills is still in hospital, fighting a very nasty infection. He is having good days and bad days, still having very high temperatures and is washed out. The infection was caused by bugs in his intestines getting into his blood and causing septacemia, and, of course, settling in his hickman line to cause a line infection. He has now had two such infections that have been classed as "life threatening" as well as numerous others that were pretty serious as well. There is, naturally, some cause for concern about this so we are off to our "Fulham Pad" at Chelsea and Westminser Hospital on Tuesday.

Wills will have a barium follow through study to make sure there are no obstructions and blockages in his gut, and to see just how slow things are at the moment. After that, the team will discuss if an illeostomy will help drain some of the fluid that is growing these bugs (bringing a bit of his bowel out through the skin to drain). They also plan to see if they can get Wills to tolerate a tiny bit of feed into his intestines. At the moment, he is unable to tolerate anything. If we can get him to tolerate a little bit it will help his intestines to normalise a bit and prevent this build up of gut bacteria that is leaking into his blood. We have no idea if he will cope with this. We will just have to see. It will not be enough to feed him and he will still be dependent on TPN for the time being.

If this does not work, there is a chance he will be assessed at Birmingham for intestinal transplant. One near fatal infection could be a one off but two puts him into the bracked of "TPN complications" which coud make him eligable to go on the list. However, we still have th complication that it seems Wills has a degenerative neurological condition and that would be contraindicative of a transplant. There are still so many complicated questions and issues to sort. The infection seems to have bought the issue of transplants to a head again but, in the same conversation, William's local consultant explained how it seems Wills has problems with the junctions between his muscles and nervous system. The impulses are not being sent to the muscles properly and this is likely to be degenerative as the nerves then die. His tests results and clinical picture seems to support this at the moment. So, in the next few weeks or so we need to establish whether his intestinesfunction at all, whether an illeostomy will help, whether he needs to be assessed for transplant now or if he can still safely get by on TPN for a while before this becomes urgent and, of course, whether his neurological condition is a degenerative one. It is strange, we muddle on along and then, all of a sudden things come to a head for a while, then we muddle along again, often just as we were before. We are just about to get into the coming to a head stage for a while. It is a shame, we have been in this stage every single Summer since Wills was born. While everyone else seems to be planning their holidays, our family is once again separated with Wills and me in hospital.