The dreaded 'T' word

We have had a very busy day. Erin went ti theatre in the morning for her line to be removed, it went well and she was back in half an hour. Then we had a consult with one of the Leeds consultants who was up for a joint clinic. Her exact words were 'it doesn't look like we are winning' which pretty much sums up how the last couple of months have gone.

Basically Erin's liver has cysts in it now which mean bile is getting trapped and she will probably get recurring infections from them, it is not really a failed Kasai but more like a failing liver. This coupled with her huge liver, large spleen, ascities, poor clotting and low albumin level mean a trip to Leeds in new year for a week to complete some pre transplant assessment tests. Although this doesn't necessarily mean a transplant for sure, it leaves us one step ahead if things don't perk up in next couple of months....

We got home an hour ago and don't have to go back for a whole week (touch wood) when they will take bloods to make sure the new antibiotics are keeping a lid on the infection.

In a way it feels better to know what we are facing and be able to prepare, it's been on our minds for some time. There are lots of benefits to be gained from a transplant that will enhance Erin's quality of life. In another way the thought is truly terrifying and we know it is not going to be easy if that's what has to happen.

Erin is exhausted and tucked up in her cot so I'm off to join her in snooze land for some catch up sleep.