It has been a tense and exhausting day! The team met at 8 for the weekly transplant meeting. This was the meeting where William's recommendation would be discussed. I didn't sleep overly well last night and, strangely, I was woken at 5am with the sound of William grinding his teeth. He was lying wide awake staring at the celing - perhaps he was picking up on the mood.
I tried to eat breakfast this morning but it just glued itself to my throat as I tried to swallow it. The transplant meeting continued on into the weekly ward round so I hadn't heard anything when the transplant co-ordinator turned up. She told me the outcome of the meeting - the team had decided to recommend that William be accepted onto the list for small bowel transplant! The rest of the day has been a bit of a blur. I listened to the transplant co-ordinator and gave her heaps of mobile numbers. I was itching to call Paul throughout the meeting. I took the opportunity to call afterwards to tell him what the decision was and make sure he was OK with it. When I got back to the ward, the liason nurse was already there waiting. He took me to another meeting room where the consultant was waiting to talk me through the recommendation and sign the consent forms. There was one for the operation, one for UK transplant for William's name to be on the register, one to consent to photography during the procedure and one to consent for William's bowel to be used for research.
In the midst of all this, I was busy packing to come back to London. William had his vaccinations just before we left. I finally calmed down enough in the car (at about 3.30) to eat a sandwich. It has been huge day. It hasn't all sunk in yet and I am pretty exhausted. There is lots more to say about the plans for William and I will expand on it all tomorrow. The big news is that we have been offered this amazing chance for William. We have a lot to go through ahead of us but there is now hope that we just haven't had for so long. It is a big relief. That term doesn't quite seem right but I can't think of a different one.
We are now back at Chelsea, in our usual spot. I have made it all cosy and now it is time for sleep.
5 comments:
Thats brilliant
Now thee is a different sort of wait but you are moving on
x
Hurray!!
I know it is just the first step, I know this is a long road with an uncertain end, but it is hope. From what I have read it would have been unfair and madness quite honestly to let William just go on and on getting more and more line infections. At least this way now his poor little veins just have to hang out long enough to receive the new bowel.
Is he on the active list as of now? Or is there still some time before he goes on it fully?
I'm thinking of you all as always
xox
WOOOO HOOO!!!! Thats fab news what a whirl wind 2 weeks you've had. I know this is only the start of a whole new journey for you all but fingers crossed it is a short journey :)
Sending massive hugs and thinking of you as always. All my love Charlotte x
I had tears in my eyes as I read this blog.
hey sweetie
That's amazing news!! will email soon, give me a ring if you need/want....welcome to the washing machine xxx
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