Saturday, May 17, 2008

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!!!

Friday, May 16, 2008

Botox on a Friday (or Tuesday) afternoon

Not for me, although I couldn really do some with the ever deepening worry lines. William was finally seen by an orthopedic doctor about his 'deformed' feet. You can wait ages for such referrals but, all of a sudden, physios appeared and the next day bought along an orthopedic doctor or an 'orthopod'. His verdict -lots of long latin words to describe the abnormalities in William's bones and tendon. The solution - botox injections into the back of his ankes. followed by 'serial castings'. This will be a long process where plaster casts are put on his feet and up to his knees. The first one will be put on immediately after the botox and each week he will go to orthopedic clinic to have his progress reviewed and the angle of his casts gradually altered to correct his feet. This will happen today or Tuesday. After 4 weeks, we will assess if this is working and, if so, continue...for several months If it is not, he will need surgery to lengthen the tendons at the back of his legs.

I didn't really want to do all this before his transplant assessment but have been told it is necessary ASAP or it will be too late to correct. We always knew this was progressing and he may not walk for ever. However, it was thought to be part of a degenerative condition. It seems now that he has a rare, genetic gut problem called 'tricho hepatic enteric syndome', THE for short and, along side this, mild cerebral palsey. Separating these out has made his treatment plans clearer - intestinal failure = TPN and transplant assessment and cerebral palsy has its own tried and tested ways of addressing various problems, such as correcting foot deformities caused by tight tendons or 'spasticity'.

It is all progress but painfully slow and unpleasant for William. He is 3 years old and stuck to a 2 foot drip line 20 hours a day. Now he will have both his legs in plaster and won't be allowed to walk and run around with his walker for as long as it take A toddler confined to a chair for many weeks, perhaps months. I think I will write a toddler entertainment book.