“A quick note to communicate the important news that Rose is going to be placed on the waiting list for a liver transplant, in about 8 days.

Yesterday the transplant surgeon came to see Rose, and said "Well, there's not much to say. Let's book her in!"

A moment of anguish on him pronouncing those words - I truly thought he had said "It's looking grim". Can you imagine my relief when I cleaned out my earholes and took in what he had actually said?

We know we're still a long way from Rose being in the clear, but the fact that she's made it through to being listed is huge . . . Her liver specialist says that despite her small size, Rose has proved that she has a really strong constitution, and has a fighting chance. Transplantation is her only chance for a healthy life; her liver condition would otherwise kill her in the coming year or so, or even sooner if she succumbed to a nasty infection.

It's a very emotional time, knowing that we'll be waiting on the decision of a grieving family to donate. Impossible to ignore the gravity of that. One of Rose's ward mates is booked in for a transplant at 6 tomorrow morning - just in time for him, as he's critically ill and had only been moved down to Intensive Care today. A little 5 year old guy. Heady times.”


Amanda M said…
Hi - not sure if your blog is still active or not, I found it through a search that someone did to find my blog...Hope Rose is doing well.

My niece has biliary atresia as well, but is doing really well. Also, we're starting an international liver families forum, once it's up and running I'll send the official link.

All my best,
Amanda, Aunt to Katie, age 7, BA, kasai, biliaryatresia.blogspot.com