Apparently Averi has a laryngeal cleft, a split in the wall just under her voicebox that separates her esophagus and the top of her wind pipe (larynx). When she refluxes, this split opens and allows the food that comes up to enter her breathing tube, causing her to aspirate. The light goes on, this is why she can’t eat. Now why are we just finding this out when she is 4 months old?
This is something that will take another surgery to correct. Unfortunately, we have to wait until she heals from her open heart surgery. She has a step 1 or step 2 laryngeal cleft (out of 4), so they should be able to fix it endoscopically. If not, they will have to make an incision in her neck. There are normal bacterial that live on the voicebox that could be on the neck incision that would cause lots of problems if they migrated down to her chest incision. So we have to wait at least a month for her chest to heal before they can do a video swallow study and decide for sure when the surgery will take place.
I swear her G-tube will be the end of me; we will never get rid of it. At least now we know what the problem is.
4 comments:
Oh man!! :( At least you know now, like you said, but that really stinks. That poor baby - you poor momma!!! At least we live in a time she can have a g-tube - even if it is a pain, right?? :) Love you.
What a cute picture of Averi. She is so lucky to have you guys as parents. You guys are doing so awesome with getting and staying informed and keeping up with all her appointments, etc. She is in such good hands.
I am so sorry that it has taken so long for them to figure out what it is. Saying it again...you are my hero...
She always looks so ADORABLE! I love her little bows. She is a doll, Tiffany.
No, I'm not jealous that I didn't get a girl...why do you ask ;)
Dr. Wiet is an awesome Doctor!! We see him for Nick and Lindsey. He is the one that discovered Nick was Q22 Deletion. I am so sorry you have to go through another surgery but you will be in good hands.
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