Ashley's Story

She will leave fingerprints all over your heart


So Far

...its not been so good around here today. Ashley is struggling more than I have ever seen. Basically the amount of drug in her body is causing her to lose her mind. She has clawed herself so deep that she has blood bruises underneath her chin that go all across her neck. She has clawed the transplant incision until it has bled and now has tiny scabs all up and down it that she continues to open each time she scratches it. Both shoulders have blood bruises where she is scratching so deep it causes the blood to rise to the surface but has not yet broken the skin. She is screaming and fussing and not able to be consoled. Its been off and on like that all day. We are using Tylenol and Benadryl round the clock in an attempt to ease her discomfort, but it only gives her a few moments of relief. I believe they would like to add some oral Ativan to the mix, but I don't know if it would do any good.

She is basically suffering from toxicity from the 3 medications she is on. The levels are astronomical as we battle this rejection. It is an ugly cycle that I HATE to have her stuck in. The more you add the worse it gets. They are tweaking all of the doses again in an attempt to find a safe level for her.

They think it will take a couple more days for the side effects of the steroid to start wearing off. By that time she should be scoped and we will be waiting to find out if we must start an even stronger drug to continue the battle against the rejection.

Her urine output is very, very low. The kidneys are suffering because of the high level of her Prograf. It came back at 20 this morning! This explains why she can't urinate. She has received and albumin infusion, and we are currently waiting on a blood transfusion to arrive. After she receives the blood we will chase it all with lasix in an attempt to make her pee. Her BUN is above 30 now and her creatnine is climbing as well. The surgeon told me this morning that her body has "an awful lot of healing to do inside of the bowel" and that she would need the extra blood to help that take place.

The hope we were given for a quicker stay in Omaha is slipping away from us. I'm not saying it can't happen, I'm just saying with the surgeon that is coming on service tomorrow it is highly unlikely that we will be transferring closer to home anytime soon. Definitely not on his watch.

Ashley Kate no longer looks like Ashley Kate and that is such an emotional issue for me. Her face has swollen to a new level. I don't know if it will ever return. She is miserable because her eyelids are so heavy that her little eyes barely open. She keeps hitting herself in the face and I wonder if it is because she can feel the extra weight?

Anyway, its been a long day and its only 2:00. I'm hoping she falls asleep soon so that I may snuggle up behind her on the rug and pretend we aren't here.

If anyway is making a run to Target in the next day or two I would love to have some shampoo and a refill for our air freshner(thanks girls). If not I'll have Dave mail some to me on Monday. Several people have asked questions like what size Ash is wearing these days and what she loves. She wears a 3T. She still loves Blues Clues and books (especially the touch and feel kind).
The coily tubing you see in her pictues is actually IV tubing that allows her more "leash" to move around on the floor.

It's been a sad day so far and I'm not sure its gonna get any better.


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