A photo from Ben’s adoption file
I meant to write a final wrap-up of our visit to Cincinnati, but got right back into real life. Meaning, no quiet time in a dark hotel room while Ben naps. It really was quite the trip, finishing off with a fever for Addie and a detour through snowy rural Ohio (or maybe it was Kentucky?) because of a closed road. No lie, GPS and GoogleMaps told me the detour would take 2 days and 4 hours and involved a ferry. What?!?!? I pulled over, had a quick cry, studied the map, turned off the ridiculousness of my navigation devices and off we went. Addie suggested we listen to “We Know The Way” from the Moana soundtrack since we were clearly doing some serious wayfinding. We blasted it and felt very inspired and empowered. We also saw an abandoned waterpark, which was really creepy. All in all, it only added about a little over an hour to our trip. Addie and Ben were so incredibly good during the long twelve hours of travel after a long week of appointments and unexpected illnesses.
Our final appointment at Cincinnati Children’s was fairly uneventful. Ben had a FEES study, which involved a small telescope being passed through his nose (he was awake) in order for the ENT doctor and speech therapist to get a better look at his swallowing while eating and drinking. Interestingly, he had some intermittent movement of his “paralyzed” vocal cord. The doctor had no definite explanation for the regained function, other than being pleasantly surprised. When Ben took a sip of juice, there was some wild sloshing (my words) that could lead to aspiration, but overall it seems he is learning how to better protect his airways while drinking. He still needs his liquids thickened, must use a straw and his positioning should be carefully monitored – no tipping his head back, one sip at a time, etc. – but he is making progress!
We were told the airways team would meet in a week or so and call with their final recommendations.
A few parting words included:
“Roughly 60 kids are born with complete tracheal rings each year.”
“It is truly a rare condition.”
“90% of kids need the surgery.”
“We are cautiously optimistic he’s the 10%.”
“Let us know if he starts to turn blue.”
“See you in 6 months!”
Except not really.
Two weeks post-scope and Ben was not sounding great. He never sounds great, but the “washing machine” sound while breathing just wasn’t letting up. The nurse said she’d expect this up to a few days post-procedure, but not for this long. A few phone conversations later, a course of steroids was sent to our local pharmacy and I was told Dr. Rutter wants to see us back in three months. Ben also needs another sleep study determine if they will include a DISE (drug-induced sleep endoscopy) procedure during the next OR visit.
So we are back in the scheduling game. I found out this morning that the sleep study at our local children’s hospital is set for March 29th. Hopefully Cincinnati Children’s will be able to schedule soon so we can start to figure out travel and child care. The thought of doing this again in just 10-12 weeks is a little daunting. But, we were entrusted to be the parents of this little boy and went halfway around the world to get him and call him our own. When you factor that in, I suppose Cincinnati is considered fairly convenient.