Yesterday was a much needed day of rest. We hit up the Disney store, stocked up on snacks at Target, napped, and then headed across town for dinner with my cousin and her family. It’s so fun to see our kids just pick up where they left off two years ago. My dad is also in town for work, so it’s been really helpful to have another adult to distract all of us and help out in the evenings.
And it was a good thing we had a day of rest. Because at 9pm last night, Ben started barfing. It continued until 10:30 or so. I’d never seen his little body so limp. I was hoping it was just carsickness, but by 3am and 4am, while he was heaving and whimpering in pain, I began to panic he wouldn’t be well enough for anesthesia. All that time off of school, turning down playdates, and avoiding public areas to keep him healthy and then this?!?!
Thankfully, Ben’s lungs were clear, his temp was normal and his stomach was empty, so anesthesia gave the thumbs up. The little stinker even mustered the energy to wave to nearby nurses as he rolled down the hall on a stretcher. Then the doors to the OR opened, he blew me a kiss, and that was that. He’s sort of a pro at medical interventions by now.
Here’s what we learned today:
– Two-thirds of Ben’s trachea is composed of complete tracheal rings. Meaning, two-thirds of his windpipe is restricted and unable to expand as he breathes. We originally believed he might have one or two complete rings. Nope!
– A 3mm tracheal tube fit through the restricted portion of his trachea. This is the size of tube used to intubate a neonate.
– They also found he has a tracheal bronchus, which means the airway (bronchus) to one of his lungs comes directly off of his trachea. The doctor explained to me that pigs have this type of airway, so don’t be concerned if someone refers to this as “pig bronchus” in the future. Ben has similar anatomy to a pig. Because at this point, why not?
– Most Important Info of the Day: Dr. Rutter believes Ben could possibly be in the 10% of children who do not need surgery! He is taking a cautiously optimistic approach and will see us back in 4-6 months for another evaluation. Trips to Cincinnati will be our new norm until a decision is made one way or the other. I was warned this could take years to decide.
– But what about all the symptoms??? The team is going to treat Ben’s current symptoms of strider and otherwise noisy breathing as a baseline. They told me he will still needs steroids to make it through a typical cold. His breathing will still sound like a washing machine when he’s running around. We will still see some retraction when he’s having a particularly rough patch. But his current “bad” is not bad enough to warrant a very, very risky surgery.
So tonight, we went out to celebrate with burgers and milkshakes. Poor Ben had to eat goldfish and a banana, but was totally back to his goofy self.
Tomorrow we return for a FEES (fiberoptic endoscopic evaluation of swallowing ) study. A small telescope will be passed through Ben’s nose and he will be be given various foods to eat. Should be interesting!