At the beginning of Averi’s heart surgery, Dr. Wiet, the ENT doctor, performed a scope of her voicebox while she was awake and a bronchoscopy after being put under anesthesia. She did fine having something in her throat, which I was worried about, and he was able to get some really cool pictures.
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.