The week ahead

As ever, thanks for your lovely messages of support. It means soooo much! Wills didn't have his notox yesterday. They needed to plan a bit more as he can't have oral sedation so will need IV sedation in a staffed operating theatre. This is planned for Tuesday. At least he can enjoy being on his feet for a few more days. Libra - he is not having walking plasters and is not allowed on his feet during the process, not at first at least anyway. After a while, he will move onto 'barred boots' A pair of boots on a board with a bar between them. He will wear these for a set amount of hours a day, while resting and sleeping so will be able to be on his feet inbetween. There is still a chance he will need surgery after the initial 4 week trial of serial casts following the botox. I am not too chuffed about that but they have explained that he will be unable to walk much longer if we don't fix his feet a bit now.

On Monday, we will discuss mre details about the transplant assessment and we hope to have an idea of when we may go by the end of the week. This has become very urgent as William has virtually run out of veins to but his hickman line in for his feed. He has had 12 lines and most of his main veins are now thrombosed (scarred). This line is really precious and we are no longer allowed to use it to take bloods, so the poor thing will have to be a bit of a pin cushion for a while. The next line will have to go into the hepatic vein that flows into the liver. This is very tricky to use for TPN and the insertion is not straight forward. They have now established that William is completely 'unfeedable'. This, together with tricky line access and recurrent life threatening line infections has made the assessment all the more urgent. Everyone here is expecting Wills to go straight onto the active list following the 2 week assessment at Birmingham. Apart from these discussions, and the botox, next week will be spent stabalising his TPN (intravenous feed) so we can go home on Friday :-) :-) Once again, 'a few days' in hospital has turned into a month!!!