"Unremarkable" and next steps.

We had our follow up with the pulmonologist yesterday. Grandma H drove down to go with us because Dave was swamped at work. We turned it into a quick overnighter and had a fun stop at Barnes and Noble, Hobby Lobby and dinner at Islands. The hotel is 2 minutes from the Hospital which makes it fast, and they came through with dessert!! Ice cream sundaes for the kids, glass of wine for the adults. Definitely a win-win!

So where are we? Still in the land of the unknown. He was very attentive and took everything we had to say and report in, as well as reviewing his records again. Genetics came back "unremarkable." This basically means that nothing showed up on his genetics, but because they can't test for all the genetic mutations, atypical can't be ruled out yet. (That would have been WAY too easy!) He definitely spent a lot of time processing and thinking. This is definitely not a puzzle with a clear picture on the top of the box for us to put together. 

Next steps now are multi-fold. First, is to have a second sweat test done. He said he doesn't have any reason to believe that it will be much different. But, if it normal, that would be a plus. They are going to get us on the cancelation list to hopefully get us in sooner, so I am crossing my fingers we can get in before school starts... If the test comes back similar to his first test, Jackson will have a bronchoscopy and a chest CT. Our doctor is also going to talk with our ENT about getting a sinus culture, which could potentially happen at the same time as the bronchoscopy, even possibly independent of the sweat test results. While we were there, they did a throat swab (sputum test) to check the junk going down his throat. My guess is it should be good right now as he just finished antibiotics....but who knows. Our doctor is also referring him for an ultrasound, which I should be able to call and schedule Monday. Spit results should be available middle of next week. With school starting relatively soon, and schedules starting to get crazy, I am going to push the nurse to at least try and get a timeline for the various scenarios. 

Basically, we seem to be doing a good job despite the fact that he keeps getting infections. At this point, I've resigned myself to the fact that it's going to be awhile before we have any definite answers. And no matter what the answers we get, things/treatment may not change. He recommended that we call our ENT next time he has a sinus thing going on to see what he recommends, but that our GP seems to be doing a good job. I did ask our doctor point blank this time what his "diagnostic impression" was at this point, and he said he is 50-50. 

The kicker to all of this is hearing Jackson make comments like, "I'll just never feel good" or telling Addison, "you never feel as sick as I do all the time." That's why we keep pushing for answers. At least if there is a "reason" Jackson will have a better time making sense of it for himself. But we have a plan for now, to keep on figuring this out. So that's what we will do!