We’re back in Cincinnati this week for some final tests and scopes before making decisions and plans for the tracheal reconstruction. This morning we had a swallow study since we informed them of Evie’s aspirating (what she swallows goes into her lungs instead of her stomach). We were very much not looking forward to the swallow study since her last one was so traumatic. It went better than expected, though! We couldn’t actually get Evie to put enough barium laced food in her mouth, but we did get to see the mechanics of her swallow some. The speech pathologist explained that when you do a jaw distraction, it brings the base of the tongue forward which is great for opening the airway, but makes swallowing much more difficult. The base of the tongue makes contact with the back of the throat in order yo swallow, so moving that forward means a person has to work significantly harder yo swallow properly. She was very pleased with how Evie’s tongue makes contact in the back to swallow, but we could see where things go or how strong her swallow is. We thought we’d have to discourage Evie from eating (something she’s finally showing interest in!), but the speech pathologist thinks it’s worth the risk of aspiration in order to strengthen her swallow. You can teach someone to swallow, but it’s a lot harder to teach them to WANT to eat. So we’re very encouraged. We’ll still be careful, but with the ability to suction her trach, her strong cough, and her Vest treatments, I think she’ll do well!
Tomorrow we have consults with GI and pulmonology and then Wednesday, she has a triple scope with GI, pulmonologist, and ENT. Then hopefully we’ll know clearly what the next step is!