Wednesday, March 30, 2016

And that, my friend, is what they call (stoma) closure.

Waiting with her Tubie Friends bear - who also got a hospital bracelet
Zadie is now blessed with only the holes God gave her.  She went in last week to have her trach stoma surgically closed.  At the same time, the surgeon cleaned up the scar tissue at her Gtube site and made sure that was fully closed.  I was able to go into the OR with her and be with her until she was asleep.  The surgery took about an hour and a half.  The anesthesiologist told me after that she was easy to intubate, which is excellent news, since a huge reason for her being trached was how difficult she was to intubate.  It's another sign that her lower jaw has grown out significantly and her upper airway is vastly improved.  A lot of Pierre Robin kids get jaw distractions, and it was suggested as a possibility for Zadie at one point.  We're very happy we elected to wait and see how her jaw grew out on its own.   

All ready to go!

When I first got to see her in recovery, she was still asleep.  They extubated her while still in a very deep sleep so that she didn't cough.  I saw Dr. Bergman right after surgery, he said everything went great.  I asked about the main possible complication, which is when air gets trapped between layers of skin.  It can be a very serious complication.  He was very confident that it wouldn't happen, since they had tested the closure in the OR by pushing air through. 

Once she was awake, she was pretty cranky, which is what she's typically like after anesthesia.  But, her oxygen sats were awesome.  Upper 90s.  I was so relieved to see that.  One of my worries going into this surgery was that she was relying on the open stoma to breathe and she would struggle once it was closed.  Seeing the good oxygen levels really reassured me. 

Great numbers!
She was to be admitted for the night just for observation, and it took forever to get a room in the PICU.  Unfortunately, she couldn't eat or drink anything for 6 hours after the surgery.  She was getting IV fluids all along, but she was hungry and thirsty.  Once we got past the 6 hours, she was allowed liquids, which included jello, yogurt, ice cream, juice, etc.  Then, the next morning, she was finally able to eat real food. 

Her new bear got bandaids in the same spot Zadie did. 
First meal, 24 hours after surgery
Feeling great and ready to bust out
She got released on Saturday afternoon.  We took the dressings off on Sunday.  She was a little freaked out by the sight of the incision on her belly.  She was asking a lot of questions; why was there blood, how did the doctor cut her, etc.  I wasn't expecting that!  But, it's amazing to see her neck without a hole!  And it's amazing to hear her talk without hearing the air rushing out of the stoma. 

Every day, she shows me her belly and her neck and says, "Look, it's healing up!" and asks me to take a picture.  She's definitely a strong kid and I would love it if this is her last surgery and she can just be a regular kid now. 

Some info on decannulation and stoma closure:


  1. Congratulations!! We hope to join 'the naked neck club' one day, too!

  2. Thank you! I hope for that for you as well!