Ashley's Story

She will leave fingerprints all over your heart


Two Loop

We spent today running more tests, more labs, and more consults as we all try to get an idea of what is happening inside of Ashley Kate.  Its so very complex and there are so many disciplines involved that the room often felt as though it had a revolving door. At one point I looked up and there 7 doctors in here around her bed all asking us questions about her.  Although we are weary from it all, we are so thankful for the efforts being made to figure things out before we jump into decisions that will ultimately become life altering for us all.

The most shocking of all findings today has been that Ashley apparently has two loops of small bowel that were not explanted.  We had NO idea they were there.  Our information and understanding of Ashley's explant came from inside the waiting room as we sat across from her surgeon who had just completed the removal of her bowel and his words fell on exhausted and emotional parents.  I don't know if what we came to understand was misinterpreted or misunderstood and all of that doesn't really matter at this point.  What does matter is that after today's findings we have been told that Ashley does not have two abscess sites in her abdominal cavity.  What she does appear to have is a small bowel obstruction.  We are numbed by the findings simply because I never even knew it was a possibility to ever have a small bowel obstruction again.  That worry had been eliminated in my mind that night and I've never considered it again.  The only way to remove the obstruction is to operate.  That means they will have to open Ashley up and re sect the remaining bowel loops.  It is so unbelievable.

We will have another CT done tomorrow and based on its results will have to decide where we want the surgery to be performed.  I won't lie and say I wasn't completely knocked down by this.  I was.  I could feel my insides shaking at the very thought of opening her back up and operating on the bowel.  I'm still shaking.  I am hoping for something, anything, to change this course for her. I fear that opening her up is going to be disastrous, but if its found to be an accurate diagnosis then there is no way out.  I'm trying not to get ahead of where we are and just wait for the final test results, but as Dave prepares to leave tonight I'm finding it difficult knowing what I will be facing without him here.

I don't know what tomorrow holds for us, but it will involve another day of difficult discussions and decisions that once made can not be taken back nor can the consequences of those decisions.

There were other discussions about her kidneys, liver, and spleen.  We've learned a lot of things I'd wish I would have never needed to know.  Its all connected and so as one area begins to struggle the others do too.

If I look at the big picture I begin to fall apart.  I sat in the dark of the ultra sound room today and cried silently as I stared at the screen. The tears fell and fell.   I can not imagine life without her in it.  The idea of her being anywhere but home with us is numbing.   I'm trying so hard not to fall apart.  I simply can't take it all in right now.  I'm facing one hour at a time and getting though it the best I can.  I want to take her home and listen to her laugh again.  I want to see her play and watch her be ornery.  I want so desperately to rewind the calendar and be back two, three, four weeks ago.  Its beginning to sink in that her life is changing drastically and that we may never have those days again.  Still I am so committed to a life of quality.  I will do whatever it takes to make her days as happy, as carefree, as painless as I possibly can.

This journey has never been easy, but the one thing that has always come easy during it is the loving Ashley Kate part.  I love her more and more every minute.  She has been the biggest blessing in my life and the greatest teacher of how to live it.

I'm praying today's finding were wrong and that tomorrow we will be given different options.


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