Instead of having her line removed on Friday she is having it out tomorrow. On Friday her bloods were much the same with her CRP going up a fraction. This meant there was still an infection somewhere so they didn't want to remove the line encase she needed more i.v. antibiotics. Ironically it may be the line itself that is causing the infection so it was thought best to wait until Monday to see what the CRP level did, if it spiked sharply it's likely the liver again.
Today the CRP has risen a little to 50 so it's likely she will have the line removed in theatre but we'll see what the Dr's say tomorrow. The specialist from Leeds is up tomorrow so she may well want a biopsy to investigate the state of the liver damage after the infection so it might happen tomorrow too. Her clotting factors were not great again so they've corrected this with an infusion of vit K, it's a bit worrying as she ready had a dose last week so they should still have been good.
We know Erin's liver is quite damaged from her Liver Function Tests (LFTs) from blood samples and it's also very enlarged, this is causing her stomach and lungs to be squashed leaving her with no appetite (hence the tube feeding) and fast breathing. This damage is very likely to be permanent and we've been told the next few months will determine whether she needs a transplant sooner rather than later. The main aim is to get her bigger so fingers crossed she starts to put on a bit of weight, she is still only 6.2kgs.
We both feel a transplant will be in Erin's future now and in some ways it may be better to have one as a baby, her immune system is not developed enough to mount the same rejection response of a new liver and she'd remember nothing about it. Time will tell I suppose but the waiting is very frustrating to say the least, it would almost be easier if we knew one way or another.
Anyway we were allowed home on 'pass' for the weekend which was lovely, I hadn't been home for 3 weeks! It was a bit stressful getting to grips with the tube feeding especially the pump for overnight but we managed fine and it's actually less stressful now we know she is getting all the food she needs. Erin was much more settled at home and had far less colicy episodes. She loved the Christmas tree lights and lovely decorations her Gran & Papa McIlvaney bought her, let's hope we are home on Christmas day to enjoy them again.
When we came back to Yorkhill today I passed my first NG tube (under the nurses instruction) which was daunting to say the least, much more stressful than tube feeding lambs at work! I felt it was important that I learnt to do her tubes so we don't need to worry about getting help when she pulls them out. I feel oddly better now I've done one but it's horrible to have her look at me in horror that I'm doing something she finds distressing.
My nephew Liam got out of hospital on Friday too and he is now waiting on an appointment with his ENT consultant, fingers crossed it was just an ear infection. He is the sweetest kid ever and told my parents not to visit him in hospital if they managed out in the snow but to visit Erin instead as he was fine, bless. He is being treated to a few days in London by my parents so I hope they have a lovely time.
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