Day 3

Jeez what a busy day. Early start and many meetings including the Speech therapist, social worker, liver specialist nurse, consultant anaesthetist, live donor co ordinator and the main man the transplant surgeon. Everyone is very helpful and gives us great advice, we really are in the best of hands.

Brief update is an MRI is needed to look more closely at the blood flow through the portal vein, it seemed low on the scan and would fit with the advanced hardening of her liver. Hoping to get MRI done on Friday but not yet confirmed, they need this done before a transplant can go ahead.

All appear to be in agreement and she will be listed for transplant. Her liver is just about coping for now but she is on the slippery slope and we need her to stay as well as possible for when the call comes.

We are proceeding with the live donor testing but I can't say much more about that for now.

It is being noted by all involved how unsettled and poorly Erin is feeling now, this may go in her favour when it comes to waiting times as a liver will always go to the sickest child. At the moment her quality of life is seriously affected and this will probably only get worse.

It's starting to sink in what lies ahead, it sounds like the first 3 months post transplant are the most telling and critical, nothing is ever as simple as it sounds and it is all very complicated even when things go well.

God I wish we could fast forward the next 6 months....