Ashley's Story

She will leave fingerprints all over your heart


"We'll always take you back... know your welcome here."

Yes, I do know that. I would just like to reserve that invitation for when its really needed.

That's how I feel about it. If it can be done here then lets get it done here. If it has to be done then ok. If it could be skipped and we could spare her going through it then lets skip it. That's our philosphy when it comes to Ash's health care and procedures.

Ash 's stoma(the hole or opening) around her mic-key button is a mess. It is painful. There is blood coming from the inside of the stomach. There is fresh and old blood showing up on the gauze dressing we place around it. The button no longer fits well(since swelling up as large as she did last week). She screams throughout the day, she pulls on it, she picks at it, she signs, "it hurts" over and over and over again. She has fluid pouring from it onto her clothing keeping her moist and damp at all hours of the day and night. Add to that the vomiting and it points to some type of problem.

After discussing Ash's status with her nutritionist from Omaha this morning she mentioned that she was going to pass that information along to the coordinators. I asked her to assure them that we were managing and didn't need to be called back there. She told me they would probably want to call and discuss it all with me. We both giggled knowing that the last thing we want to have to do is take Ash back out to Omaha(unless she really needs to be there of course).

I received my call a few minutes ago. Hence the title of this post. What they would like for us to do is schedule a scope and while were at it a biopsy. Ugh! I'm just guessing about the whole ulcer situation, but if her stomach or the sites where her bowel was attached to her stomach and her large intestine have developed ulcers then we need to know. The only way to know for sure is to go in and take a look around. Just in case its PTLD. That's what she said. Not that she thinks it is, but the biopsy will rule that out. Ok, I'm going to make some calls and set it up. I asked what we would do if she does have ulcers, you know the normal kind that aren't cancerous, and she talked about giving a med called Carafate(sp). Ash has been on this before. Its been a while, but she's had it before. Some days I wonder if there's a med she hasn't been on, but that's beside the point. She also mentioned treating them some how while there inside scoping. I'm still not sure how we will know if there is an ulcer in the stomach itself since the scope won't go into the stomach, but she said that most of the time they arise in the areas of the anastomosis(attachment sites of the transplant).

I'll start calling in the morning. Dave and I want Ash to be more comfortable. We hate for her to be scoped again, but if it brings answers to what is causing her to be so uncomfortable then we need to have it done. I think I'll start with GI. We don't have an appointment with them until May 1st, but I'll try anyway. If that doesn't work Ill call her surgical team. They did the last biopsy for us. Between the two teams I'm sure something will get scheduled.

Of course I'm fighting ugly thoughts that pop up in the back of my mind. Things like ongoing rejection, PTLD, and the like. Surely we aren't headed in those directions again. Its just a bad habit that is hard to break when you've traveled this path again and again.

As always I know that our Nebraska team "will always take us back".


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