Ashley's Story

She will leave fingerprints all over your heart


Another Positive:(

Once again all of the blood cultures have returned positive for staph. Its disappointing, but not surprising. The odds of clearing her line of this very sticky, very stubborn staph is slim to none. I'm not sure what we are going to do. I'm really not. I don't think Ash really ever had a chance with this line. It was infected from the moment she came out of the OR with it and has remained so every since. We assume it has finally become strong enough to resist the vanc since 5 full days of treatment made absolutely no difference. Her antibiotic coverage was switched last night and tomorrow we will draw blood cultures again.

Her weight has increased as well. We are now pushing one ounce shy of a 15lb weight gain. Imagine carrying an extra 15 lbs on your entire body. Her chest is heavy. Her arms are heavy. Her hands, her legs, her feet. She is so heavy it makes it painful to lie in any position. I spent the entire night shifting her trying to get some relief from the ache of it all for her. Around 4:30 this morning we gave her a dose of Tylenol and she "slept" for about 2 hours. She is currently sitting in her bed, eyes too heavy to keep open, and signing "stand up, go".

I'm still waiting on her CBC and Metabolic panels to come back. I think they plan on giving blood this morning, possibly platelets, and I'm hoping some lasix behind the blood because the last thing she needs is more volume. She had a very small response to the albumin and lasix yesterday.

Ashley did require some oxygen assistance over night. She is holding her own this morning, but just barely. The older she gets the harder it gets to keep the tubes, cannula's, etc. on her. She is not a baby anymore and she has an opinion and a very strong will. Add to that a brain injury and her lack of understanding and there is absolutely no way to make her lie still and leave it on even though she needs the help. I spent the better part of last night pinning her arms down and fighting her. Its exhausting. I asked for some blow by tubing instead and in a moment of brilliance I taped that thing on to dinosaurs neck and laid him right next to my girl. Make no mistake, she was not fooled one bit and refused to cuddle, love, or touch her beloved dinosaur. Instead she gave him the evil eye for the rest of the night. This morning since her numbers were up I removed the tubing from dinosaurs neck and she instantly picked him up, kissed him on his nose and forgave him for his treason like behavior. Oh, how I love this girl! My hope and prayer is that she can maintain her breathing independently so there will be no need to fight over a nasal cannula.

I haven't heard Ashley laugh in over a week and her smile is gone too. She is so yellow and so huge and so miserable it breaks my heart.

Lots of questions coming my way and the best thing I can say is "I don't know the answers". No one wrote a book to follow for times like this and the only way to get through is to tackle one issue at a time. That is what I'm concentrating on. I can't even consider a transplant at this time until we can get back to "normal" whatever that "normal" is going to look like.

Even in the midst of chaos and confusion I find precious, tender, ministering moments. Ashley's back and spine are taking a huge amount of the pressure from the extra weight causing her to ache all over. I was able to sit behind her on her bed and rub lotion on her back. I could feel her relax and begin to breathe slower and easier. She is beautiful and sweet and smelled delicious as the lotion masked the smell of the bilirubin that is seeping through her skin. I was thankful in that moment. Its so surreal to be thankful in a time of crisis like we are in right now. My heart is so conflicted, but still it was a sweet memory I'll have to hang on to forever. For that I am grateful.


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