Today has been quite busy but our wee baba appears to quite like this hospital and is enjoying the change of scenery. Although this did not transpire into sleep last night, zzzzzz. Erin had blood taken earlier but they couldn't get enough in two attempts so will need another jag to get more on Thursday. She is getting used to these now and doesn't get too upset which is good but also very sad to think she has accepted that this happens a lot to her. She also had a chest X-ray which she enjoyed, she was chatting away on the table! Then we had a long meeting with our consultant about Erin's current health and the transplant process and procedure. It was tough going but also very positive. We told her how unsettled she has been for weeks now and how uncomfortable her big tummy makes her.
The jist of the meeting was they don't think they need to do biopsy or an MRI, it looks like she is sufficiently ill to warrant a transplant as her quality of life is severely affected and will not improve without a new liver. Although this will be confirmed at the end of the week and will depend on the results of a scan tomorrow.
Also tomorrow we have a meeting planned with the dietician and an ultrasound scan, which Erin usually enjoys. The rest of week involves meetings with transplant surgeon, the transplant co ordinator, a consultant anaesthetist, a social work (!), a psychologist (!!), the live donor co ordinator, the physiotherapist & the pharmacist. Erin is to have an ECHO scan and ECG to check her heart and we are to discuss the possibility of having a Hickman line put in place for drawing bloods.
It is all quite intense but positive. They are going to change some meds to help reduce the ascities (fluid in her tummy) to make her more comfortable so we are hoping she will leave here much happier.
The current waiting time for babies on the list here is averaging just 3 months although we should prepare for it to take 6 months. There are currently two other babies on the list who are the same blood group as Erin and, quite rightly, each of their positions there depends on how sick they are and not the length of time on the list.
Our heads are spinning a little but we are feeling very well looked after and have our own room on the ward which is always a bonus. Jamie's sister Marie came in with some dinner for us and a welcome visit, having her around is such a bonus of being down here. Jamie is staying on the ward tonight with tiddles so I'm being treated to a full night of sleep at Eckersley, can't wait!
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