Ashley Kate is Doing Great
In comparison to what has been going on with our sweet girl the last 3 months I'm happy to say that Ashley Kate is doing great.
Taking all things into consideration, I mean she is still battling a staph epi line infection that won't clear, and her liver is still sickly, but overall she is doing so much better than she has been.
I held her on my lap last night and stared at her rosy cheeks and pink lips and smiled so wide because her coloring is returning to normal. She had been so toxic and so yellowed from her high bili levels that I had almost forgotten what her beautiful complexion was supposed to look like. Her eyes are not yet white again, but they are so much brighter and I'm not afraid when I look into them anymore. She is able to stay awake for longer periods of time and she feels so much better its unbelievable to me to see how much her liver function can effect her day to day.
Her bilirubin had made a serious and concerning climb from a level of 1 up to 14. It had gotten to the point that I dreaded her weekly labs and held my breath as I scanned over them because the rapid changes were so frightening. This week her bili had come down 4.4 and although that is not a safe or healthy number it is SO much better than it had been just a few weeks ago. In addition to the bili number her liver enzymes have dropped hundreds of points in the right direction. Again they are not in the normal or safe range, but the changes have been drastic and encouraging. We are starting to breath a little easier and our hope is beginning to return.
At the point in which her bili had climbed all the way to 14 and her liver enzymes registered in the 4 and 5 hundreds we decided we didn't have much to lose so we began treating Ash like we would if she were a patient in our own office presenting with liver struggle. We began adding two supplements to her dose of Prograf daily and the changes in her liver function have been astonishing. In the beginning we were nervous about stimulating her immune system too much, but there comes a point when nothing is working anymore and you have to do something different. I am SO grateful that Dave is good at what he does. SO thankful for the wisdom and education God has given him. SO thankful that he is Ash's dad.
So this update is much different than the last two. She no longer glows. Her skin is not leaking anymore. She doesn't smell toxic and she doesn't sleep the day away. She is happy, smiley, giggly, ornery, and so full of life.
We are still concerned about her liver and its ability to continue functioning properly, but our main concern this week is trying to find an antibiotic that can penetrate through the slimy layer of bacteria that has colonized inside the wall of her central venous catheter. We know its localized to the catheter and not systemic because she is not sick. She shows us no sign of being septic. However there is always the possibility of it becoming more dangerous and so we need to find a way to clear it. Our doctor is working with an infectious disease doctor and together they are trying to figure out something that may work.
I'm grateful every single day to wake up here in our home with her. She is precious and amazing and we are so, so blessed. We have an uphill battle ahead of us and I don't expect that it will ever get any easier, but for today I know that we are doing our very best for her and it seems to be working. Its a good feeling to tuck her in each night and kiss those sweet cheeks knowing I'm doing everything I can to give her a childhood as free from pain and fear and struggle as I possibly can. I love her so very much.
Thank you for asking about her. Thank you for praying for her. Thank you for still being here with us. Its always a blessing to read encouraging words from those of you who love our sweet girl so much.