Day 4

Having a wee play while my tube is out for a few hours

We had a slightly quieter day today. We had a chat with the clinical psychologist first thing which was fine and she didn't say either of us were mad, always a bonus. All joking aside it's very reassuring that there is lots of support available, not just for us but for Erin as she gets older.

Erin then had an ultrasound of her heart (called an Echo) which went well and her heart is fine. She especially liked the fish tank in the waiting room.

We had to change her NG tube today so we took full advantage and gave her 4 hours tube free between feeds. We took lots of photos and even managed a short walk to the shops. Then we had a nice visit from Marie which always perks us all up.

Then we had a long talk with the Pharmacist about post transplant meds and all that comes with them. We've heard it before but the side affects, although rare, are more than a little sobering, kidney failure and (gulp) cancer to name the worst.

Yesterdays blood results showed her clotting is down a little to 17 but this is going to be closely monitored. Also in the news today is that her ascities medication is not working orally, which can happen when the guts are so squashed they can't absorb it properly. This may mean she isn't absorbing her other meds and feeds well so we must try to reduce her big tummy. So we are switching to iv diuretics which means we won't be getting home until this improves.

The MRI is booked for 1pm tomorrow so the report won't be back until Monday anyway. So we will be reassessed then to see if things are looking up on the tummy front but they have mentioned that we may have to stay in until transplant time. This could be 6 months or more on the main list but it is unlikely we will wait as long as that, we are moving forward with live donor testing. Once a match has been assessed this might only take 6 weeks to arrange although she would remain on the main list until then if it were to go ahead.

In a way it is a relief to be staying here, I was feeling anxious about looking after her at home whilst she is so unwell and I know we are in the best hands here. In another way it's not good that she is now too ill to be cared for at home. Her appetite is decreasing by the day and she now only takes 30-40mls of milk orally at each feed although she can still be tempted by a few spoonfuls of fruit.