Day One - Cincinnati Children's Hospital

We made it to Cincinnati without any issues yesterday afternoon. I do have to say Ohio is not much different than PA - not much to look at and very flat. Daniel once again did great in the car but did get a little anxious on the last hour of the trip. Who wouldn't after five hours in a car.

So today was our first day at the hospital. I do have to start off by pondering why all Children's Hospitals are located in crappy areas - the Bronx, Philly, Ciny - however, the people have been wonderful so far. The hospital is huge and thankfully this time we brought Daniel's stroller - we forgot it the day we went to Columbia - lesson learned. The other thing I have to say is that these folks are "spot-on" regarding appointment times. We had our first appointment at 8:30 a.m. and we were in an exam room by 8:35 a.m. For our second appointment, which was an anesthesia consult, they came looking for us since we started chatting with the registration individual. Can't ask for more than that. Hopefully this efficiency will continue as we have two more days of consults and testing.

This morning brought a functional endoscopic evaluation of swallow study. This study, also called a "Fees Study," allowed us to find out how Daniel swallows and if he kicks stuff into his trachea. It was quite a cool study since we were able to see down his esophagus via a video camera in real time. They used green food coloring to track Daniel's saliva so they could evaluate his ability to swallow. As you can see Daniel had a little issue with the food coloring. And yes we took him out of the hospital looking like this.....

The study was also very cool because it was the first time we were able to see Daniel's vocal cords and how much they were moving. The Dr. who preformed the study was great and he was from New Zealand so Mike and I have some fun new phrases regarding Daniel's issues. The Dr. also did a fabulous job in explaining why the H-type TE fistulas are problematic to repair and why vocal cord paralysis is possible when repairing them. He totally made us feel better regarding Daniel's issues.

So what did we find out?? Daniel can swallow but there appears to be some narrowing in his upper esophagus, which we knew. The question that remains is how severe is it and what needs to be done to fix it. Most likely it will be a dilation or two but we will know more after Wednesday's procedures. As for his vocal cords, his right one is not moving at all and his left one was moving. And I quote from the Dr. "pretty good", however the vocal folds were not opening wide. This led the Dr. to believe that there might be some post sub-glottis scarring thanks to all the intubations Daniel went through, but he stated that would a good thing as that maybe easier to repair. However, he would be able to get a better read on Wednesday.

The afternoon featured an anesthesia consult which was uneventful but at least we know where we are going on Wednesday. Tomorrow features a chest X-ray and a gastroenterology and pulmonary consult. And Wednesday brings all the answers - so we hope. Daniel will undergo a number of scopes, which thankfully he will be a sleep for, and will have to stay overnight so they can determine how bad or if at all he has reflux. The good news is that by Wednesday we will have a possible plan of action and that is what we have been searching for.

As I mentioned in "On the Road" maybe the tunnels were a sign that we will be getting the answers we are looking for, we experienced a couple more today. When registering for "same-day surgery" and anesthesia consult the registration individual gave me a choice of a gift for Daniel. The first item was a frog and Mike's dad had a famous saying "when you have to eat a frog there is no sense in sitting and starring at it, just as well get busy" so of course I had to take the frog. The second was the woman who did the anesthesia consult was named "Cindy." Not sure what they mean but we will take them as positive signs.

All for now.....