Monday, November 18, 2013


I'm terrified. It's 630am but I've been up since 4 and was tossing and turning the hours before that. I'm filled with doubts about the choices that have been made and where we are going with her medical care. With each step we've taken, it's been the one I said I wouldn't do to her. Today will be a life changing day for Audrey and I hope with all of my heart it will be for the better.

So Audrey was supposed to have a cecostomy tube placed last Monday. This tube would have enabled us to flush her colon from the beginning rather than torturing her with enemas to clean her out from the end. However, thanks to the brilliance of her surgeon, a contrast enema showed the valve between her small intestine and large intestine didn't work. I was very disappointed since this really limited our options but I was thankful we found this out ahead of time because it could have meant months of trying to make something work that was never going to work to begin with. After discussions between her team it was decided that an ileostomy would be her best choice. This is where the end of her small intestine is brought to her abdominal wall and the poop drains into a bag. This would bypass her dysfunctional colon completely and hopefully allow her to tolerate feedings. The decision took a few days for me to come to grips with. It was ultimately the surgical fellow who reminded me that this doesn't have to be permanent. This surgery can be reversed. That was a great relief to my mind. I'm terrified of making the wrong decisions, especially ones we can't undo. My only requirement for this surgery is that we also place her mitrofanoff at the same time. A mitrofanoff is where they take her appendix and run it from her bladder to her belly button. Then when it's time to cath her and drain her bladder, we can do it from her belly button. This is much easier for her, not something anybody can see and will allow her to cath herself easily. But this is a major surgery. Both of these procedures are and a mito kid does not handle big procedures. So if we are going to do one to her, we are doing them both so she doesn't have to do this next year.

So after much discussion and planning, today is that day. Sometime this afternoon, my daughter will go to the OR and they will disconnect her small intestine and put it on her tummy and then create an opening in her belly button to her bladder. She will no longer poop from her bottom.. She will no longer need daily enemas and suppositories and buckets of miralax and milk of magnesium, we hope, and pray that this surgery will dramatically change her life so we don't live in the hospital for bowel clean outs and abdominal pain and distension. We will see...

This is Audrey with her ostomy doll. She learned what it's for and why it's there and how to put the bag on. She was also site marked for the location of her ostomy, where it should work best. X marks the spot!

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