Tuesday, April 29, 2008

'I think William now meets the criteria for transplant'

We are back in hospital as Wills is still not right following his line infection.

Today, a slightly arrogant (although I often think this when I meet a new doctor for the first time and change my mind when I get used the them) young locum registrar told me William's platelets are up and it doesn't look like his low grade temperature spikes are any concern so we can go home tomorrow. Naturally, I believed him and was very pleased. When I asked his gastro nurse about transport home with the TPN we had with us, he was a tad confused so spoke to William’s consultant. She came in for one of ‘those chats’ and, boy, was it one of those! William can’t go home until Monday at the earliest. Sad though I am, that is sensible. He is not completely right, not too bad, but not right and is now spiking high end of low grade temperatures when we go into his one of the lumens on his line which is a bit ominous. She said we may loose the line but we hope not. She also said that William now meets criteria for small bowel transplant. This has always been something for consideration in the future and, last month, the idea of going for assessment was to see if it was the future the team and we, his parents, thought was best for him. Now, it is felt that this future may have arrived. He has had/has got yet another line infection. He can, and has, become critically ill with such infections and the combination of another failed gut challenge, his increasingly enlarged liver and spleen, uncontrollable ‘massive’ (medical term!) stoma output and the fact that the illeostomy, although making him more comfortable, has not stopped the bugs from his gut translocating into his line, has led to the conclusion the time has come when a transplant can be seen as a life saving procedure and the complications of TPN are an immediate threat to his life. If we loose this line, we will go into his 12th!!! We are running out of venous access. Of course, I was somewhat shell shocked. We will probably be at Birmingham for assessment within weeks, a couple of months at most, and could be on the list at the end of the two week assessment. Of course, they may decide that he is not suitable or that he does not yet need to be on the list but, for the first time, doctors are saying that they think the time has come. They have spoken to the transplant team about him recently so this is not just the Chelsea team thinking this in isolation. A large part of the assessment is for the parents to decide if it is what we want for him so I am trying really hard not to make my mind up before I have all the facts. Paul is certainly more open minded than me (right now, I want it for him because, even though it is a risk, it is a chance!!!). Paul is a bit more stuck on the risk element but I think my little fighter could come through it. Being in and out of hospital so much and with so much uncertainty in life is tough on the whole family and I have to think of the girls as well.

3 comments:

diddyangel said...

Sarah you are in my thoughts and prayers you are an amazingly strong woman and I know whatever they throw at you you can cope with. Lets hope this is the beggining of a new life for wills. Hope the weekend isn't too lonely. Sending hugs x

Tinypoppet said...

hey lovely

You know where I am if you want to chat anything through....you're being fabulous as always, sending loads of love to all of you xxx

HOPEXX said...

hi mum please can you put some more pics on it please!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!