Thursday, August 14, 2008

Day 9 - Nearly There!!!

This evening, I can't eat and I very much doubt I will sleep much. Tomorrow morning at 8am the team will meet and discuss their recommendation following William's assessment for small bowel transplant.
I am about to write some bullet points for the liason nurse to read to represent our feelings. We have worked out some stats.
(To my best memory) William was in hospital with a line infection about 65% of the 12 months. With the home IVs as well, he was being treated for a line infection about 78% of the last 12 months. We have called an ambulance because he was septic and going blue 3 times in the last 12 months and there have been a couple of other times when we drove him to hospital and he became very poorly there. He also became very poorly once en route to Chelsea from Mayday. He has had two stays in the High Dependency unit because of line infection and has had at least 8 infected lines removed - I have lost count. We met the transplant surgeon today and he felt that this was grounds enough to list William for a small bowel transplant. He went into some detail as to how the operation would be done and the size of donor William could accept. I will blog more on this tomorrow, if the rest of the team agree with him. The liason nurse feels it is an appropriate time for William to be listed. I have no idea what anyone else thinks. I was asked if Paul could be reached tomorrow to give verbal consent to demonstrate we are both in agreement that we want William listed. He will add his written consent during the next 2 weeks William will have a few live vaccinations tomorrow (which are already prescibed and on the ward in case!) and can't be listed until they are out of his system. The surgeon was very positive about a transplant for William. Again, I will talk more about this tomorrow. It has been a huge fortnight. We have had a lot of information and Paul and I are both in agreement now that we want to accept a transplant for William if it is offered to us. All the tests and information are collected. It is all down to the last discussion. It is going to be a long night...


Anonymous said...

Keeping my fingers crossed that all goes well tomorrow. Big hugs.

Jax x (from the CF forum)

b-z said...

thinking of you

b-z said...

oh sory, its me, plodding hippo

Katie H said...

I really hope that the meeting this morning has gone well and they are in agreement to give Wills the chance that transplant offers. Thinking of you.


Anonymous said...

WOW..exhausting XX
really hope your prayers are answered tomorrow x
runnyeyes (Fetch)