Miserable

Ashley Kate is so, so miserable tonight. She has been all day as well as last night. She cries and shakes and begs for water non stop. Our hearts are breaking to see her so miserable. We have been over every detail of her labs hoping to figure out why she is behaving the way that she is. Finally tonight Dave and I think we may have stumbled on something. Toxicity. FK toxicity. Last month it shut down her kidneys. This time I think it may be causing the tremors, vomiting and personality changes. Its such a struggle to maintain the correct drug level when she is losing fluids at the rate she has been the last few days. When she is dry vascularly it causes the drug to become more concentrated in the blood stream. This is what we think has happened. We have been reading up on the toxicity of the drug and it is describing all of her symptoms. I've seen her react this way before but its been a couple of years so its not the first thing that came to mind. The problem is that we don't actually know the amount of drug that is currently in her blood stream. We are drawing the lab in the morning, but it will take 3 days for it to get back to us. It has to be sent out.

Its such a scary place we find ourselves in. Too much drug and it causes problems, too little drug and it causes rejection. She has slept very little the last couple of days. Her little body is exhausted, but yet it can't stop shaking or vomiting. She has cried her self to sleep twice today but only rested for about 20 minutes each time before she woke up vomiting again.

I so desperately want to rewind our lives about two to three months and get back to where she was. She was so happy, so "healthy". Absolutely thriving. Last month was so hard on her and this month is starting out to be the same. We are helpless and that feeling brings on a hopeless feeling as well. I just want to ease her struggle and there is literally nothing I can do.

Your prayers are greatly appreciated at this time. More than you know.