Ashley's Story

She will leave fingerprints all over your heart


Ahead of the game

We're trying. To stay there I mean. Instead of trying to run behind and play catch up our goal is to stay ahead of this "game". This was why we chose to come last night and linger a few more days to see if her stooling slowed down or if things turned around.

After speaking to our transplant coordiantor last night Dave and I requested this transfer. Ashley had a really tough day yesterday. She spiked fevers, fussed, moaned and complained in her sleep, and slept an unusually large amount of time. All red flags. Up until yesterday she has basically been "happy" (except for the needles and such). Once her fluids were restablished and her electrolytes balanced she had begun to smile and play and be ornery once again(like removing her hair bow from her ponytail with her toes! I love that picture). Although we hate to separate the family and burden Blake and Allie's hearts we knew we needed a biopsy of the bowel and more than likely a central line so that we could rule out rejection and keep Ash from getting too weak. A trip to Shreveport is much easier to make than a trip to Omaha. So we continue to hope that by being ahead of the game that we can avoid that last leg of this trip.

Best case scenario...she stops stooling out and returns to normal in just a couple of days. The likely hood of that actually happen is relatively small because the transplanted bowel is a tough one. Once you have a virus it hangs around and around and around. Thats not being negative or having a lack of faith. Its realistic. Its what life is like for Ash. Its the way things are and the coordinator reinforced that to me over and over again last night on the phone. Everyone hopes, wants and thinks its just a stomach bug, but in the transplant world its a long, long process of restabllishing normality for their GI tracts.

Worst case scenario... her immune system ramps up to fight the virus(if she has one) and in the process causes her body to reject her organs as it fights the virus. The key to staying out of rejection is to keep that immune system low. Rejection is not a fun process. We almost lost Ashley Kate last September and October as she battled her way out of it. They were some of our darkest days in the last 3 years.

Ash is having her blood drawn at this moment and is crying and pleading with them to leave her alone. Its a daily event while sitting in this hospital bed and as far as she is concerned they just need to stop sticking her.

We don't know the plan for the day. We are hoping to get a bowel biopsy on the schedule before the weekend. All of the stool cultures have been collected and will be sent out this morning.

Dave and I are both here. He will be leaving and going in to the office shortly. Allison has a big soccer tournament this weekend and one of us needs to be there for her. She has already called this morning and reminded us about it. Blake's soccer team won the conference tournament yesterday and finished an amazing undefeated season. He is off this weekend but will be playing baseball in Lufkin next weekend.

As always I am holding out hope to get back home and be a part of all that we have planned for our family this fall and holiday season. There are 2 big trips coming up that we desperately want to take Ashley on. There is also the pumpkin patch to attend(for her first time) and its only 21 short days until we decorate for the holidays(I've already confessed that we decorate on Nov.1 and always have). Life is precious and we want to live it in our home not the hospital.


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