We made it to Cincinnati yesterday, after a long couple of days of driving. Whew. We managed to stay ahead of an ice storm yesterday, and get settled into our hotel room just before the big snowstorm hit.
Needless to say, the kids are overjoyed at the snow and cold. My husband and I? Well, in our good moments we're bemused. Ha. The drive to the hospital this morning for Ike-a-saurus' first test was pretty harrowing. Snow EVERYWHERE, still dark outside, cars unintentionally sliding through red lights. It took us 50 minutes to go the 3.6 miles from the hotel to the hospital! But we made it early to our appointment, and the doctor and speech pathologist managed to make it, too, so yay!
Ike-a-saurus was not a fan of the up-the-nose camera for the FEES. I don't blame him. He's had this study done twice before, but those times he had the trach, and I wonder if it felt different this time. He was not just pissed. He was – and I mean this with much intensity – fucking pissed. He pulled the camera out once, spit in the speech pathologist's face (though that wasn't really intentional, just mad about being forcefed). It was Not Cool. And we never did get much into his mouth so that we could see his swallow.
I give the crew credit, though. They didn't push it and they did the best they could with the video footage they got. We now know for sure that he protects his airway when he's "under duress" so it seems likely that trying sips of thin liquids and working our way up to non-thickened liquids is an OK thing to start doing when he's not under duress. So yay for that.
Then we went for donuts and made snow angels and now we're back at the hotel, shooting for a nap and gearing up for tomorrow. Hopefully the snow will abate some so we can make it to the hospital for our 6 AM (!) arrival time. Then he has his scope and we see how the graft in his trachea is healing. After that, recovery in PACU and hopefully back to the hotel by lunchtime. Fingers and toes crossed. I'm a little worried because his nose is runny and he has this on and off cough. I don't know if that's enough to call off the scope or not. Hopefully not.
All I can say is whew. And thank goodness for room service. And WOW, SNOW.