Ashley's Story

She will leave fingerprints all over your heart


The Roughest of Days

Last night it all kicked into high gear and Ashley Kate is now having one of the roughest days she has had to date. She is so miserable. I don't know of any other way to describe her. The drug is making her crazy. She is clawing her chest and scars until they bleed and is banging her head into the floor. She has hit me repeatedly as I try and hold her to calm her down and she is so angry with me. Her face has swollen to an all new level and her little cheeks are huge. She is clawing at the pic line and we are all afraid it may be on its way out by evening if we can't convince her to leave it alone. We have tried everything. She has had a dose of Tylenol that allowed her to fall asleep for a little over an hour and she just received a dose of Benadryl to try and help control the itching and clawing. Dave and I are not huge supporters of either of those drugs, but have decided that if we need to use them to get her through this last dose then we are asking for it to be done. Anything that can give her a few moments of relief is what we are looking for.

Ashley's kidneys have become very sluggish and were not real sure why. She has had very little urine out in the last 36 hours and is now receiving a fluid bolus. Her last dose of steroid will be started around 2:00 and then we will try and survive the night. Hopefully tomorrow will be a better day for her and hopefully the drug has done its job and stopped the rejection. If not, then I know round 3 will be even worse than what she is going through now.

I'm doing my best to help her through this, but honestly I feel helpless. There is no amount of rocking or cuddling or singing that can take away the side effects. She is so sad and so frustrated and I'm sure she wishes I would do something to help her.

We won't know until Wednesday if the rejection has been cleared, but her stool output has started to come down a little and that is a good sign. She is eating a little bit of vegetables and I am encouraged to see her interest in them. She remains on TPN and lipids until her tube feeds can be started up again. She has had no more fever and that is an indication to us that she became sick the other night from stirring up something during the scope. So far it seems she has not gotten an infection. The culture may have been contaminated. At least we are hoping so.

I think the Benadryl may have started to kick in because her hands are slowing down. It would be a blessing if she could sleep through this last infusion. Hopefully she will.

Thanks for checking in on her today. Hope your weekend is enjoyable.


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