Ashley's Story

She will leave fingerprints all over your heart


The Plan

Since the beginning, day 1... I never, we never, Dave,Blake, Allie or I, have ever planned on losing our Ashley. It is not an option for us. We are not going to lose. We are not. I can't accept the idea that she will not be with us. I refuse to entertain it for another moment. This is not the plan for her life. It is not.

We know there are close calls. We have lived through many days when things were rocky. We have seen her go to the brink only to rise up and fight her way back. We all know it is possible, but we refuse to believe that it is probable.

I found myself sitting outside the hospital this evening in a dark parking lot and all I could think of doing was screaming, "SHE'S 5! Does anyone care? Does anyone get that? She is ONLY 5. She's not 50, she's 5 years old." Ashley Kate wants to be 5. She wants to live every single day of her 5th year. She's not quiting the fight and so we refuse to quit either. So there you have it. We won't quit fighting as long as she wants to fight. That is the plan.

This afternoon Ashley Kate weighed in at 53.8lbs. Wednesday she weighed 39lbs. I'm not sure if you can picture an extra 14+ lbs on my baby, but that is what we are trying to pull off of her. The albumin may or may not work. It may cause her to become worse. Time will tell. Personally I think her appearance is a little better. I think she is peeing off some of the fluid. Not in the amounts I had hoped, but still I think its helping.

Her liver is very sick. She is an orange yellow color. Her liver is large and swollen making it difficult to find a comfortable position. I have no idea why her liver tanked the way it did. It was functioning SO well. Her numbers had been beautiful. The train of thought is that this infection is proving to be too much for her liver to handle. I don't know exactly what that means. Again, time will tell. Its just too soon to know tonight.

She is breathing on her own. Her vital signs remain stable. We are here in the hospital tonight to be safe. We discussed it with our physician and collectively decided to monitor her for a few days here. Just to be careful since she is presenting such extreme changes in her weight and liver function. Ashley did not agree with our decision. She wants to stand up and leave. Those are her "words" not mine.

In the bigger picture I don't know what is going to happen. I know this acute illness is forcing us to make decisions sooner than we were ready too. I know it is shortening our time. I know all of that. I also know that there is something comforting about being in our home hospital. There is no panic. No "protocols" that MUST BE FOLLOWED. Things are just so calm here and I love that. There are just people from our community, from our home town, who care about our baby, that came to work today to do the job they were called to do and they are making it as easy on Ashley Kate as they can. I appreciate that. More than they will ever know. I appreciate the privacy being given to us and the small home town touches that make it easier to spend nights away from our own home. We are in Longview. Hoping to stay here and manage as long as we can. Next stop would obviously be Shreveport. Final destination Omaha if need be.

So thats the plan. At least this is as far as we have gotten with our plan. We plan on treating Ash and watching her get back to her baseline normal and then take her home. If at anytime things don't go according to that plan then I will have to re evaluate where we are and devise a new one.

So there! We are in this for the long haul. Not giving up, not taking the easy way out. We plan on taking her home and allowing her to turn 6 years old this summer.


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