Day 2

Today has been very busy and exhausting. It began with an early ward round to discuss a yesterdays bloods. Her CRP & Bilirubin have fell a little to low 20's and albumin is up a lot to 39. This rise in albumin is good but not what we were expecting as her ascities seems worst, her tummy has got much bigger recently, this was going to be checked at an ultrasound in the afternoon.

Her clotting is up again to 19 which indicates her liver is not managing to absorb the Vit K we give her orally everyday. So she had another iv dose of Vit K today to see how her liver can process it once it is already in the bloodstream. This was done after more bloods but it went smoothly and they left in a cannula for tomorrow, once it's in they want to keep the access. Erin was smiling within 2 minutes and chatting away very quickly. Then she had an ECG test done to check her heart, it didn't take long and she was very well behaved.

Then we had a meeting with the Physio to see where Erin is at with her physical development and to see how we can help her. She is doing ok for now but needs to improve her arm and leg strength so she has exercises to do.

Then we had a long meeting with the dietician about her nutrition and recent feeding issues. Basically she is concerned she may have a temporary lactose intolerance from the antibiotic treatments and the gastroenteritis so she has to change milk to a lactose free version. She agreed Erin is at the limit of volume of milk she can manage in 24 hours but she needs more calories so she has introduced duocal and liquigen to help. The new milk called Pepti Junior tastes disgusting so we have to add nesquik strawberry flavouring to it, it looks like a strawberry milkshake!

In the playroom we met a lovely little girl who is 3 years old, diagnosed with BA at 6 weeks old and had a transplant last year after her Kasai began to fail. She was back for routine tests and you would never know she had ever been ill. Her mum was very nice and told us all about their journey. They only waited a week for the first call from the transplant team but it didn't happen in the end as the liver was needed for a sicker child. However two days later they had another call and this time the liver was right and the transplant went ahead. She had an excelled recovery and was out of ICU after just 2 days and home in 10 days! Although they were back for daily bloods for a few weeks and could only be at home as they live locally. It was very positive to speak to them both and lifted our spirits for a bit.

The ultrasound scan took an hour and even I could see how much bigger the cysts are, they are now huge. There was no ascities in her abdomen, just an enormous liver and spleen. Erin was very good and lay still, she quite enjoys scans and 'helping' with the probe. It was quite a shock to see the changes and the sonographer said very little which is never a good sign. The consultant didn't have time to talk to us about the results today but the SHO told us they are now trying to book an MRI for Friday. I don't think they were expecting the scan results but we will have to wait to the morning to see what they say but looks like we will not be coming home this week.

Erin has been quite unsettled this evening so is getting more paracetamol. I've been asking for weeks if she is in pain from her big liver or cysts and have so far been told no, it will just be discomfort. After the scan today I asked again and the SHO said yes, her liver is now big enough to be painful. I guess our gut instincts have been right and for the past few weeks the decline in Erin has not just been due to the change in feeding.
We are in no doubt that she needs a transplant but now it feels like they need to look at how urgently that should happen and it will affect where she is put on the list.