Capping trial success!

We are back home from a {longer than planned} trip to Cincinnati. But we got good news!

We left last Thursday for a planned scope on Friday (Sept 30th). ENT did a rigid scope and pulmonology did a flexibly bronchoscopy. Carson did well...we had them give him Versed prior to going to the induction room...he was VERY relaxed...drooling, relaxed : )! The results: there is some collapse just above his vocal cords (at an area or structures called the false cords). But Dr. Cotton felt that it wasn't enough to warrant another surgery unless Carson shows he needs it. So Dr. Cotton was ready to attempt capping trials (this means that Carson's trach is plugged off with a little white cap...so the trach is not being used, only there for safety or emergencies). We were given the choice to come back to do the trials or just stay and do them over the weekend. We opted to stay...long story short, Carson did really well (day & night) and didn't desat at all. So we came home Monday with instructions to cap his trach during the day. They want us to return in 2-3 months for a sleep study with his trach capped (to make sure there isn't any apnea going on) & another scope. If that were to go well, we would go another couple months capping his trach day & night before decannulating (taking his trach out) next spring...OH. MY. WORD! The fact that decannulation has even been mentioned in the near future is crazy to me {exciting, scary, unbelievable}.

Of course, there are a million scenarios going on in my head. I am super excited but I do have some questions & hesitations. Hopefully they will be answered in time. Part of the reason they are waiting up to 6 months to decannulate is to see how Carson does with sicknesses. My other big concern is that there is some amount of obstruction at the level of the false cords...they saw it with the flexible scope and we hear it when Carson exerts himself (the noisy breathing, which is slightly worse with it capped) and some snoring while he was capped at night in the hospital. So although he doesn't desat at these different times, I don't want to cause extra stress on his body from increased work of breathing. On the flip side, if a surgery is indicated at the false cord level...it always increases his risk of aspiration when the airway is opened up (& he is already at an increased risk because one of his vocal cords is paralyzed from the teratoma removal). Okay, that's some jumbled blabbering but that's kind of how it runs through my head : ) With all that said, I am trying to entrust (once again) all the details to Jesus (& in the skill/experience of these doctors). Prayers always for healing of Carson's airway but also for guidance for the doctors & for us, as to the questions to ask & the steps to take. So while there are many hoops to jump through before the trach can come up & possibilities that the course may change, this weekend was a huge step in the right direction! Hooray!

This little boy's heart is SO big! As we headed to the hospital for yet another scope (4th in 2 months), his thought was for Kellen. He wanted to get him a matching dolphin like he had gotten a different time😊. No dolphins but he did get matching dogs. These little 'gifts' from same day surgery may seem insignificant to me but they made his morning!😍

Since we were going to be in the area, Uncle Josh hooked us up with some tickets to the horse races at Churchill Downs. Very neat!

At one of our favorite parks outside Cincinnati

This hospital stay was so different...no pain, no pokes, not even an IV, just some monitors. So more time for smiles, fun, and crafts!

After the first night of capping his trach. He did GREAT!

We even got to leave the floor and go try out the play area!

Running the halls...gotta find some way to get all that energy out!

I did ask them to stop after I took the pictures ; )

On our way home, thank goodness for Nana to assist in keeping them busy!

Topped it off with a trip to the skate park in Paducah!