09 February 2017

Day 2 - Surgery Update

Bennett's surgery took much longer than we had expected it to take.  We received updates during the surgery but they weren't more than: Doctor is working and your son is doing well.  After the third phone call like this, we knew we weren't going to find anything until the surgery was over.

Once the surgery was over, Brian and I were ushered in to an empty room near the Surgical Waiting Room to wait to talk to the doctor.  We both sat anxiously staring at our phones.  Brian broke the silence, "I feel like we're waiting to hear what's about to happen to our life."  I took a deep breath and said, "I feel the exact same way."  How true this statement would turn out to be.

The Surgeon came in shortly after and explained the stricture (inflammation that caused narrowing in the bowel) was much harder than anybody thought.  "It was like concrete," he said, "It would never have responded to anything we were doing with the dilations."

Clearly it was good we went in surgically to remove the stricture. Thankfully, the Surgeon was able to remove it for good.

But, the bad news is that when the Surgeon tried to sew together the two ends of the bowel after which the stricture had been removed, he found leakage in the bowel.  Leakage at the closure of two pieces of bowel can lead to leakage of stool/bacteria in to the abdomen.  Stool/bacterial in the abdomen often leads to infection.  The risk of serious infection is not ok for anybody.

So, the Surgeon explained, "I had to give Bennett a colostmy."  To allow the tissue to heal, the Surgeon pulled a part of Bennett's bowel to the surface of his abdomen to allow for emptying of waste at the skin.

While the colostomy is expected to be temporary, it will take several months to heal.

Bennett will be given a contrast enema at the end of March and, if successful, will have his bowels repaired (the colostomy taken away) at the beginning of April.

Honestly, I don't think I yet have the words to describe how I feel.  I am in shock.  I am devastated.  I'm disappointed.  I am so so very sad.  Brian and I both.

I believe this is the right decision.  The Surgeon did the best he could with what he had to work with.  He is a good doctor and wants very much to make sure Bennett is well long term.  I'm just sick over what transpired.

Bennett has woken up a few times since getting out of surgery but is mainly sleeping.  He has a pretty big scar that will need to heal.  He doesn't yet know about his ostomy.  Child Life will come visit tomorrow and help us do some medical play to work through the beginning conversations.  I dread every single minute of it.

I have more thoughts to share but I haven't been able to process many of my feelings yet.  This is not what we wanted.  I'm so sad for my sweet boy.  He deals with enough.  He deserves a break.


  1. Oh Breck & Brian! I am so so sorry. I know this isn't even close to what you were hoping for. I truly can't even imagine all the emotions you're experiencing right now. Bennett is the bravest boy in the world and has the most amazing parents. Sending you all so much love as you learn how to move forward with this new [temporary] normal.

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  3. I am so sorry to see this. Collin had an illeostomy shortly after birth, but dealing with this with an infant is WAY easier than a 7 year old. I hope the adjustment goes as smooth as possible and I'm happy to share some tricks we learned along the way for getting those awful bags to stick!

    Prayers for all of you.


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