More of the Same

Its been a long, yucky day for our sweet Ashley. The vomiting has not gotten better. We are struggling to find something that can stop it. They are bringing in another anti-nausea medication tonight in hopes that her tummy will settle soon. She is actually vomiting large amounts of bile and it is so painful to watch her as she heaves. Her little body is exhausted and she just aches all over. She has had more labs run today and they actually look worse than last nights. Her liver enzymes are really out of whack and we are praying it is reacting to a viral infection and not slipping into rejection. We have sent a stool culture looking for any signs of glucose in the stool telling us if her bowel is still absorbing it or not. We also have sent blood cultures trying to rule out any sepsis that may have occurred by a weakening of the walls of the intestine. As long as both of these come back clear then I think we can rule out mild rejection. Please, please let this be just a viral infection that will pass soon.

I do think her color is a little better tonight. Her blood pressure is much more stable than it was when we were admitted last night. She is still whimpering and moaning, but is not able to make tears. We are working hard on her fluid status and I really do think we are getting a handle on it. I just wish she could stop losing the fluids that we are putting in. She has finally fallen asleep and seems to be resting. She has not had a restful sleep since Saturday evening. I am praying that she can keep from vomiting for at least the next half hour so that her dose of FK(anti-rejection med) might stay down. She has lost the last three doses and this is very concerning to us.

When speaking to our pediatrician tonight we discussed just how much trouble our little Ashley is. Then we decided we were going to be nothing but thankful because she has managed to stay well for the last 5 months. That is a blessing and we don't want to take that for granted. Once this passes we are planning to go for another long stretch without any hospital stays. Thats our plan anyway. Sticks and pokes aren't any fun and we don't want anymore than our required one a month.

Thanks so much for your encouraging words. Just knowing that you are praying for our Ashley makes it so much easier. I truly appreciate each one of you. I am going to lay down for a while and hope to get a little sleep while she is resting. I will talk to you all tomorrow. Goodnight my friends.