Ashley's Story

She will leave fingerprints all over your heart


Just a Feeling

Dave and I have been going through all the possible scenarios for days and something told us to check.  I don't know what to say other than it was just a feeling we had. 

Late yesterday evening, over 48 hours since we dropped off a set of line cultures, we got the call.  Ash does have a line infection.  We wondered if she might have one.  Wondered if even without her usual symptoms that alert us to an infection if she just might be fighting something. 

An infection can cause her liver numbers to become elevated.  We usually account the changes in her liver to it having to process the antibiotics we use to treat the infections, but the infection itself can indeed cause her liver to struggle.  Now we can't say for sure that this is all that is happening inside of her, but we can at least try and eliminate the infection and help her feel a little better.

At some point you become desperate as you search for answers, possible causes, anything to explain why her body is struggling.  I think in an odd way we were hoping for positive cultures this time.  Hoping an infection was there so we could treat it and hopefully make her liver not look quite so ill. 

We began treatment this morning.  We don't have an ID or sensitivities but we put a broad spectrum antibiotic on board to begin an attempt at helping her feel better.  Our local teams are amazing.  Each and every time we call them they are so kind, so quick to help, and so willing to help us help Ashley Kate.  My heart is so thankful for our pediatrician and our pharmacy.  Our pharmacist comes in on weekends if we need him to to mix her meds and delivers them to us as quickly as possible.  Our pediatrician gave us his personal cell number years ago and never makes us feel as though we have inconvenienced him in the least.  When God surrounds you with good people it makes the road we travel a little easier. 

Ash is sleeping more and more each day.  I know she's struggling when she begins requiring long naps to make it through her days.  When she's awake though she smiles and giggles.  Her face is so swollen that you can barely see her eyes.  In addition to the swelling from the steroids she has third spaced a tremendous amount of fluid the last couple of days.  Anytime she battles a big infection her vessel walls become weak and she leaks fluid into her tissues.  She is requiring large amounts of IV fluids to attempt to keep her kidneys from struggling during this mess.  At one point her BUN had climbed to 44!  That is with extra fluids infusing 24 hours a day.  Her albumin is very, very low.  We may request an infusion at some point this week.  She has an appointment with her pedi surg team in Shreveport early Monday morning.  Lots and lots to talk about.  Decisions to make. 

Overall, I'm encouraged to figure out she's got this infection. Maybe, just maybe, this could be the problem.   She is still happy.  It is hard to be afraid when she's laughing and enjoying life.  I know she must be confused as to why her body has swollen so large.  I can see its harder and harder for her to move around on her own.  Its harder and harder for us to lift her.  Dave had to give her bath for me yesterday.  I simply couldn't manage her on my own safely. 

I feel like were going to get her through this mess.  I can't explain it.  Its just a feeling I have.  I told the transplant coordinators last week that I'm not scared yet.  I've been scared before and although I'm very concerned about her, I'm not afraid for her. 

Thank you so very much for loving our girl.  Thank you for your prayers and your concern.  I know it is exhausting to follow along our journey. I can imagine it becomes discouraging for you guys to show up here day after day and read about her struggles.  Its been 6 years of documenting the journey and so many of you are so very faithful to come to this place with us again and again.  I have never forgotten how blessed we are that you love Ashley Kate.  I'm forever grateful.  


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