Wednesday, December 17, 2008

'Keeping us on our toes'

I can't wait for the day when doctors stop having to use phrases such as 'he is keeping us on our toes' about William. Today has been another confusing day. We have made some progress. William's feed is up 5mls to 30 mls per hour with a plan to increase every 5mls per day until we are back to 50. He will probably go back onto a little TPN while we are increasing, just to keep his nutrition up. The team were wondering about going back on TPN because we thought his abnormal or 'deranged' as they call them here, liver enzyme levels were TPN related. The first day he was off TPN, the came down and reassured us all that it was TPN and his liver function tests would soon be back to normal. However, his enzyme levels are now higher than ever, up in the 1000s so TPN is clearly not the culprit. It is a cause for concern so Wills is having a liver biopsy on Friday to find out what is going on and what, if any, treatment is needed. He is going to be most upset about that as it will involve another 'special sleep'.

Naturally, and stupidly, I have 'googled' to research what could cause this problem with William's liver. The main potential culprit seemed to be 'donor (or graft) versus host disease' where the donated organ's own immune system attacks that of the recipient. The symptoms include raised liver enzymes and bilirubin but also a skin rash, which William doesn't have. This can be a very dangerous complication so I had to ask if there was a chance this is what William has. As he is well in himself and has no fever or rash, it is unlikely, but it is something that has to be ruled out and the biopsy will do this. It could also be an infection or virus. If it does turn out to be donor-versus-host-disease, we should be able to get it under control. This is graded, as is rejection, with grade 1 being minor, up to grade 4 which is severe and usually fatal. If William has it, it is likely to be a low grade and one of the biggest break throughs in transplant care is impoved surveilance. So many complications can be caught early by excellent teams with years of experience in interpreting results. I am reassured by this but will still sleep more easily when William's liver numbers are on a consistent downward trend.

The speech and language therapist came to see William today and is another person who would agree he is keeping us on our toes. She explained that swallowing saliva in normal amounts in automatic but swallowing food and drink, or larger amounts of saliva is conscious and requres several steps. First we chew, then we gather it all together to swallow. Automatic swallowing doesn't require this step of gathering it all together and it is likely that this is what William will need to re-learn to be able to eat and drink. He is unable to spit for the same reason. He can't get things together in his mouth to do it. She is going to talk to a colleague and come back tomorrow to see what we can try. Poor Wills. He is so keen to try things but gets stuck and then the saliva he generates causes its own problems. He just sits there with his mouth shut unable to talk and gets quite upset. It is difficult to get the balance between stimulating him and letting him explore things like his strawberry yogurts and him being so traumatised by the result that it puts him off trying again. This is going to take a very long time and involve a lot of work and encouragement.

This may all seem like a lot of stress. Katie summed it all up so well in a comment yesterday. We do seem to have begun a frustrating and often worrying game of snakes and ladders but the transplant gave us the chance to get onto the board with a chance of reaching the square with the word 'recovered'. I was going to put the final square but I know there will be more snakes and ladders to come after William's initial recovery. The game board stretches for the rest of his life but at least he has a game to play.


Tinypoppet said...


That is all ;)


Tracy said...

Poor Wills, I'm sorry he has to undergo more poking and prodding and another special sleep. He is such a brave little boy and an inspiration to all of us. You are such a special mummy, you spend your entire time with Wills and still take time to update everyone with how things are going.

Hang in there Sarah, sending you big (((hugs)))

Anonymous said...

Im sorry to hear that he's going to be having more proding done to him; Poor man. And another special sleep. He's a very special little man and im sure will soon be keeping you on your toes and runing so fast you wont be able to keep up with him!
Transplant is one of them up and down things; you get snakes and ladders, but given time it there is a light at the end of the tunnel.
By the way Sarah how is Will's tachrolimus level's currently? I hope there behaving themselfs, unlike mine which are currently pretty low..!

Love and hugs,
Emma xxxx

Anonymous said...

I have been following your blog and praying for William, glad to hear things are slowly improving. Thought I'd drop a line as I have a son with cf (age 5) who has problems exactly like William (for different reasons)in that he can chew and swallow, but can't 'collect the food together' in his mouth. My son is getting there slowly, with speech therapy help, and I'm sure William will too. You're doing all the right things - but you may need to be patient. My boy only moved on from pureed food last year, but now can eat sausage and all sorts of foods.
We'll keep praying for you all!


Anonymous said...

Sarah I am so glad I found your bolog again I have been wondering how William is I am keeping all crossed for you.I am so glad he is progressing. loads of huggs Chantale xxx