Ashley's Story

She will leave fingerprints all over your heart


Back in our Room

Update: Ashley's temperature is rising and her heart rate is too. I'm getting nervous. Its very easy to stir things up (like bacteria) during a scope especially when the bowel is already weak from battling rejection. I just don't like the way she looks tonight. Hoping I'm just being paranoid, but things are changing.

They are attempting to draw blood but haven't gotten any yet. We drew cultures from the line and are collecting urine for culture. Her fever spiked and she broke out in a rash all over her chest and torso. I think we've caused a problem while scoping or else there might be an infection in the new pic line.

Ashley Kate has had her biopsy and is now back in our room. She is doing ok. Not great, but ok. She is trembling a lot and her skin is a little splotchy looking, but we continue to check vitals and they are all strong. I'm not real sure why she is reacting the way she is, but my hope is that nothing has been stirred up during the scope. She has a low grade fever and a little cough, but I imagine both of those are from her anesthesia.

On the surface I would say this biopsy looks better than Fridays. Both the doctor and I expected to see a much "uglier" bowel then what we saw on the screen. Of course we can't see what is happening on the cellular level, but we did see some villi and some mucosa. Fridays pathology report stated an almost complete loss of the mucosa with little to no villi present and what mucosa was there was extremely damaged. My hope is that the pathologist will see on the cells what we think we saw with our eyes. They did intubate Ash and put her all the way down for the biopsy so that they could really take their time and go deep into the proximal part of her bowel. They went 30cm deep. I think there are 2.2cm per inch so approximately 15 inches inside of her transplanted bowel. There were several biopsies taken from the different areas both distal and proximal. The distal end(the area connected to her native colon) was more damaged than the proximal(leading up to her native stomach). I was told that was to be expected because of the lack of use of the lower end. Food does not flow through it and so it is unused and atrophied from lack of use. This makes it weaker and more susceptible to an attack of rejection.

I was assured again that there was absolutely nothing we did to cause her to go into rejection. Its hard to accept that. Dave and I want answers and the most logical thing a parent thinks is that we failed to do something to protect her. That is apparently not the case. At any time, at any moment, at any distance out from transplant(whether it be 2 or 20 years) her body can reject her grafted organs. 70% of the immune system is found in the GI tract. It is packed full of lymphatics and lymph nodes. The lower end is more populated and so generally the lower region of the bowel sees more severe rejection than the upper portion. This is proving to be the case in Ashley's bowel. Ashley's rejection came very suddenly. Although it seems impossible to believe(at least for me it does) she was happy, "healthy", playing and then literally while she slept her body rejected this organ. Today I was told this is how it happens. Thankfully she exhibits the "dumping syndrome" when she is rejecting because that is what put me on alert. I knew that something was wrong when I emptied a full ostomy bag last Monday morning. Apparently there are patients who show no signs of rejection. So in this case I am thankful for all of that stool.

To be honest rejection never crossed my mind that morning. Blake and I had been struggling with a head cold and so I assumed she had picked up that virus from us and was stooling out as a result. I still believed we had a virus through most of last week, and it wasn't until Thursday that I became suspicious of rejection.

Its been a long and stressful day. Now we will wait until tomorrow to hear the actual results from pathology. I surely hope and pray the word is that she is healing and on the way to recovery. She has drifted off to sleep and has stopped her trembling. Perhaps she has just been reacting to the anesthesia.

Thank you so much for your encouragement today. Your prayers have meant the world to us during Ashley's life. I think I'll go to bed early tonight. We got very little rest last night and I think were both tired.


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