Cincinnati Children's Hospital - Day 3

So all the tests/evaluations are done!! And boy did we get a ton of information regarding Daniel's esophagus and airway. I think our heads are still spinning!! I do have to say that once again these folks have been "spot-on" regarding timing and staying on schedule. Not only did Daniel go into surgery on time, the Drs. came out in an hour like they said they would. Unbelievable!!

Overall we got good news about Daniel and some very interesting pictures of his esophagus and trachea. We finally found out that some of the issues Daniel is facing are due to his fistula and surgeries, which produced scarring, while others were due to the fact that he was born with a TE fistula and an airway that was shaped like an oval rather then a nice round circle. Anyone of these situations alone might not have been a big deal but thanks to the fact that they are all combined has lead us down this interesting and crazy path.

We did not have to stay overnight because Daniel's esophagus was too narrow to get the necessary scope down, which we kinda had a feeling would be the case given our discussion with the GI Dr. yesterday. The GI Dr. did do a dilation today which in essence is a fancy word for stretching his esophagus. Daniel will have to undergo additional dilations over the next couple of weeks and months in order to improve his esophagus and swallowing which will allow him not to aspirate into his trachea and lungs before the Drs. repair his airway. How long will that take, who knows but they were able to stretch the upper part of his esophagus to 9 mm and the middle to 7 mm. To put it into perspective, Daniel esophagus should measure 11 mm. So we have a bit to go.

As for his airway, the Drs. believe that they can fix Daniel's airway and he can be decannulated within the next year or so. (Decannulation just means taking the trach out for good.) The good news is that they are not fixated on having him turn one or what time of year they do the surgery. Dr. Cotton, who is the reason why we came here, was very genuine and the first thing he said to us was "you have had an interesting road with this little boy." Though he did not spend a lot of time with us, he was very encouraging and was totally confident that Daniel can be decannulated. However, they will not do anything until Daniel's esophagus is larger and there is no risk of aspiration.

In regards to repairing Daniel's airway they believe it can be done in one surgery and they can take the trach out right then and there. The problems there is that Daniel will have to undergo another open wound procedure which will leave another scar. The other problem is that should we do the procedure Daniel would be in the hospital for a month afterwards. So lots of decisions to be made in the next couple of weeks.

Daniel handled the procedures like a trooper. He came out of surgery quite well and knew when we put is PJs on he was going "home." He also flirted with the nurses before and after the procedures and once again won the hearts of the nurses.

We also had a couple of signs again today - the nurse who checked us in was named "Cindy" and the nurse who took care of Daniel in recovery was wearing frog scrubs which her husband had made for her due to the fact she had some troubles with her son. And when we came out of the parking garage we were by the chapel. Can't explain it but I am taking it to mean we were meant to be here.

Thanks for caring and reading. We will keep you posted as we move forward.