We arrived in Dayton on Monday night after just missing the snow storm that hit Colorado. The flight went OK...we were delayed in leaving so we had to run across the Chicago Airport to make our connection. Because of that, we left our old iPad on the plane never to be seen again (or so I expect). Otherwise we made it in with no problems.
The next day we drove an hour south to Cincinnati. We are actually staying over the Ohio River in Newport, Kentucky, but it's all the same city. We got settled into our hotel with no problems other than the occasional wrong turn. That just happens when you visit a big city you've never been to before.
On Wednesday we woke up early to be ready for a day at the hospital. We had three appointments but all of them were initial office visits. The second and third appointment were with Genetics and Anesthesiology and went as expected. We had already seen Genetics in Colorado and didn't expect anything from this appointment. If something in this area was the problem, it would be obvious in many other areas (down syndrome, energy/fatigue issues of mitochondria, etc.). With a multidisciplinary approach you have to check all of the boxes though. The anesthesiology consult was just in preparation for next week's procedures.
Our first appointment was with the main G.I. doctor that we would be seeing here at Cincinnati Children's, Doctor Ajay Kaul. We were really impressed with him overall. He had reviewed the case and knew why we were here. He talked to us and explained what tests we were doing, why we were doing them, and what areas of the G.I. system were to be tested. He explained potential complications or combinations of complications that could be going on as well as the 3 classes of problems.
For a little more detail on the 3 classes, they are either 1) structural (narrowing, flaps over the pylorus, etc.) 2) nervous system related (motility, sequencing of stomach/intestinal contractions, etc.) or 3) sensory related issues such as having a very sensitive stomach that feels full to the child even though it's really not. We don't expect to find anything in class 1 since we've done many tests that this should have shown something there. However, the CT scan scheduled for Friday is double checking that. Most of the tests we're doing fall into class 2. We are finally able to do a "real" gastric emptying test now that Jonathan can eat solid foods. Previously we had to liquid studies which are generally not very reliable. The manometry test will reveal any issues with the sequencing as well as the strength of contractions in areas around the stomach and beginning of the small intestines. The other thing we are going to do is inject botox into his plylorus (opening at the bottom of his stomach) and also open it with a balloon. This will last about 6 months, and if a narrowing or misfiring is the cause, we will see significant improvement almost immediately. Throw is a few scopes and we should have covered our basis.
If nothing comes back on category 1 or 2 than we are left with a sensory related problem. These are hard to treat, if at all, but the good news is that these generally just improve over time. This is something that he could grow out of as he gets older. With this and the past tests we've had done, we're feeling pretty good about getting some sort of answer. In a 15 - 20 conversation with Dr. Kaul we were told and explained things in a way we've never heard before.