Here's Ethan in a feeding session.
We had our feeding team meeting this morning. It was interesting and gave Mark and I a LOT to think about. We received a status from each area, which was nice, even though we get regular updates from the staff throughout the day.
We suspected Ethan would be a 'tough case' because of how much effort we have put into feeding him the past 6 years. Besides, if we came all this way, and he was a push over, we would totally look like loser parents! Well, it's one thing to suspect he is a 'tough case' and another thing to be told it by those who know. I got all teary eyed in the meeting....it's a mom thing.
The director of the feeding program is now Ethan's case manager. Ethan appears to have 'shut down' (that's psycho lingo for his eerie calmness during feedings). Based on the experience of the folks in the program, kids who are purely stubborn have good days and bad days, not a constant hours long refusal like Ethan has shown. Experience has also shown that kids who are adamant about refusal are likely doing so to protect themselves due to an underlying medical issue.
We know Ethan has several medical issues that could potentially cause his feeding issues, we just don't know which one is the major factor or if his refusal is a result of a combination of all of them. So we need to check off each issue by addressing the factors we can control. Because his time here in the program has also led him to refuse food and drink in the 'off hours' he is getting dehydrated and losing weight. An NG tube was discussed (a feeding tube that goes down the nose to the stomach) but was rejected because of Ethan's small airway. He has enough room to breath now, thanks to the airway reconstruction, but an NG tube would block a portion of the airway-not a good thing.
The other option is to surgically install a G tube, a feeding tube port in his belly which would deliver food and medication directly into his stomach. It's not 100% final, but very likely that Ethan will get a G tube within the next few weeks. This would also require Ethan to stay at the hospital 24 hours per day for a while. Lots of kids in the program have G tubes, so it is not a huge deal, it's just something we hoped to avoid by going through the program. And something we have to work out with insurance, since we are on such a tight insurance leash right now. Hopefully our insurance would not make Ethan go back to Cincinnati for this relatively minor procedure.
The other thing we are lined up for is the cardio evaluation to check on his 'rogue' artery. Officially it is called an aberrent right subclavian artery, but I prefer to use the more casual moniker...rogue. This artery is attached in the wrong place on his heart and is beating into his esophagus, creating a little ledge in his food shoot with every heartbeat. Sounds like a 'rogue artery' to me. A Johns Hopkins cardio doc will check this out on June 3rd specifically to answer the question of whether this is keeping him from feeding comfortably. CCHMC cardio docs took a peek at it last year, but not necessarily with the feeding impact in mind.
Another concern is whether Ethan is refusing to feed to protect his airway. There is a chance, which an updated, more thorough, swallow study would confirm or deny, that his floppy eppiglotis, combined with the lazered hole in his vocal cords, could allow food to compromise his airway. (Wow, that was quite a sentence!) The thought is that he doesn't eat because he doesn't want to accidentally breathe food into his lungs. Unfortunately, Ethan needs to be able to actually take in food with barium to do a swallow study. So that theory is on hold for now. I personally think this is the least likely scenario.
So, we have backed off the stringent feeding protocol in an effort to reduce Ethan's stress about eating, and are waiting for the decision/scheduling/insurance approvals needed to take the next step.
We miss you all...over and out!
Molly & Ethan