Had a bad day

This hasn't been our best day so far. All day yesterday Addy had a fever on and off. They tried to help it by keeping cool washcloths on her and putting ice packs around her. She also wasn't having very much urine output so they put a cathedar in. Once they did that she had a TON of output. The nurse said it was the equivalent of an adult have 2 liters in their bladder. They weren't positive why she wasn't peeing but they guessed that is was because her liver is getting bigger and blocking the bladder. The sites where her lines are continue to bleed which is an effect of her clotting level being so high. The plasmapheresis has helped that number a ton, but it is still not great and only helps so long.

The big concern is that she had a fever but no known cause. They had run blood and urine cultures and had found nothing. The doctors considered taking out her PICC line because there was a chance bacteria was getting into her body through that. The issue with that is, once again, the risk of her bleeding.

The doctors decided to take her off the morphine so that she could wake up and they could do a neural exam. When they took her off though she didn't wake up. They checked her ammonia level again and it was in the 400's the highest it has been. That could have been the cause of her not waking up because high levels of ammonia can effect brain function. To get rid of the ammonia they decided to do dialysis which would get rid of what is in Addy's body now, but not any more she may produce, so we may have to do it more than just today. They also did an EEG which shows brain activity. One more thing that was ordered was an ultrasound of her liver. This is where some good news comes. They determined she has Pancreatitis, which is the inflammation of the pancreas. That could be the cause of the fever and high ammonia levels. Of course there is bad news with this, there are no real treatments for it. All you can really do is let the pancreas rest. In order to do that, they have stopped the formula feeds (I don't think I shared they had put in a feeding tube) and she is strictly on fluids. More good news though, the doctors don't think that will keep her from getting a transplant.

They also decided to put an arterial line in, which is like an IV in one of the veins on her arm. This is so they can constantly measure her blood pressure. This is another thing that Addy would have had to have for the transplant anyway.

As far as donors go Addy is now in the 1B category on the donor list. That means she no longer only gets offers from our district but now this whole side of the country. We started testing for live donors but it is a long process and we are still waiting on that. We would still like to do a deceased donor if possible but at this point we just want Addy better.