The ENT procedures went extremely well for Caden on Tuesday. Caden recovered well and did not even crash for an afternoon nap. As a matter of fact, his physical therapist forgot that Sherry had canceled for Tuesday afternoon and she showed up on our doorstep at about 4PM. Caden seemed to be wired for speed so she came on in and worked with him for a while. By the end of the session she said she had never seen him like this. It was obviously the drugs. She said he jumped higher than ever that day, like 12 inches off the floor.
Anyway…back to the ENT stuff. The ENT doctor came out after he was done and told us that there was a good bit of pus on Caden’s adenoids. That was encouraging to us because we were not 100% sure about removing the adenoids at first. He did not think this was the source of the massive amounts of goobers we have been seeing, but he said the irritation could be causing some post nasal drip. The ear tube was replaced with no incident and Caden’s sinuses were cultured. We forgot to ask when/if we would get results on that culture.
SWALLOWING
While we had the ENT doc cornered we talked about the whole lack of swallowing issue. He along with everyone else is scratching their heads trying to figure out what to do medically about Caden’s lack of ability to swallow. He is approaching 5 years old and has never had a meal or a drink by mouth. That is VERY rare even among 22q11.2 (VCFS/Di George Syndrome) diagnoses. I took Caden to CHoP (Children’s Hospital of Philadelphia) last year for a second opinion on the scoliosis diagnosis. While there you may remember that I took the opportunity to also visit their ENT and the 22Q & You clinic. None of them had any wisdom to offer about the medical side, but they did recommend a swallowing therapy regiment once the medical barriers are overcome. The end of the conversation with the ENT this Tuesday led us back to the same default next step…a miotomy. This is not necessarily recommended in children, but it seems to be the last thing in the bag of tricks from a medical perspective.
I went back to the standard parent question in these types of situations and asked, “if he were your child, and I know you have kids, what would you do? Is there a place that you would take him to be evaluated? Anywhere on the planet?” The only other thing that he suggested was that we might want to have Caden evaluated by a clinic at the Cincinnati Children’s Hospital. He trained there years ago and said they have a very extensive program that evaluates the GI track, ENT area, airway, and more. He made no promises, but recommended we check into it. Right now were are tentatively planning to attend the Growing Kids parenting conference in Cleveland during the weekend of July 17th. We may drive up and try to coordinate a visit to this clinic Cincinnati on the way home from Cleveland. There is supposedly a really good zoo there and the Creation Museum is just down the road a few miles inside Kentucky so we have several good reasons to pause in the Cincinnati area. We are still in the planning stages for this one so keep us in your prayers as we try to sort through all this.
Goobers
The goobers had not gotten any better as of last night. Caden has required suctioning several times per night and it is slap wearing us out. I would say that Sherry and I have averaged getting up approximately 4 time per night between mid-night and 7am between the two of us. I cannot remember the last time either one of us slept for than 3 hours without and interruption. I know…it is a season.