Ten, Nine, Eight... Countdown For Extubation Temporarily Suspended

Today was an interesting, but typical, type of day. It wasn't until 3pm that Elias was taken down to replace his feeding tube. That in itself was slightly frustrating, because as the day went by, the chances for extubation dwindled. As we suspected, they wanted to wait until after the tube replacement to extubate. Unfortunately, they were not successful in replacing the feeding tube. The dye contrast showed the esophagus being extremely narrow. We knew that there was potential for this. It is very common in people with fistula repairs to require several esophageal dilatations over time. How many varies from patient to patient, as does the time between procedures. It is a very simple procedure with a rapid recovery time. The method they will be using on Elias is an endoscope with a balloon to be inflated at the narrow point to open the esophagus. We are not sure if this procedure will be done tomorrow or Wednesday. It depends on space in the OR. This will only temporarily set back the extubation. The only reason they are waiting is because he would need to be intubated for this procedure, so it is senseless to go forward until the procedure is completed. Though it is a little disappointing having to wait a few more days, we are more disappointed that yesterday's lack of action, or any reasonable pro-active evaluation by the Pediatric Surgery team on duty, set the time line back, even if it is for only a few more days. Our nurse today told us the attending doctor (team's head medical doctor) for the NICU was apparently very upset by the situation. He could not understand why there was no feeding tube replaced. That pleased us to know he shared our outlook on the situation and that we were not being over zealous parents. Honestly, we just want to know why steps were not taken to have this taken care of. If not yesterday, first thing this morning. His nurse was just standing by, waiting for the phone call. She felt bad she could not share more insight. Things like this unfortunately do happen and fortunate for us this has been isolated to only this one incident. We are confident that it will remain isolated as well. Elias is getting liquids via IV for now. It is possible they will order TPN and Lipids (nutrients and fats) to help him sustain until they can replace the feeding tube. So another day or so until we know if he's learned to fly.