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Why, oh why, can nothing ever be fucking easy?
The appointment with the GI doc went very well--he said Minifobette had some of the worst bloating even HE has ever seen, but nonetheless she is a "classic" case and Minifob is far more interesting from a clinical perspective--but regardless of the details, he can help them both. He made a point of confirming with me before we begin this process that what I want is for him to treat their digestive disease. Most kids show cognitive improvements alongside the digestive improvement, but some don't, and the only thing he promises is to correct the digestive disease. I said sure.
BUT THEN... I mentioned as part of their medical history that Mr. Clod's aunt has a rare genetic condition known as malignant hyperthermia. It's a muscular reaction to certain anesthetics, including an instant seizing of the heart. It is frequently fatal, but they brought his aunt back with the crash cart during whatever routine procedure she was having a couple of years ago. Anyway, we don't know if the kids actually have the gene for it, but after his aunt's event we were told to always mention that it's "in the family" anytime someone is having anesthesia.
We had of course mentioned it during Minifob's two previous procedures, and the anesthesiologist at that time just sort of took it in stride and never said anything more about it. I'm now being told that this was because he was at a major hospital--the best children's hospital in the state, supposedly--so they just took whatever precautions were necessary, no sweat. The kids' planned colonoscopy/endoscopy procedures are being done at an ambulatory surgery center, the staff of which is far less comfortable with the possible risk. Our doctor can't do our procedures at a full-scale hospital, because his schedule in Texas is literally to fly in Monday morning, spend all day in pre-op consults, all day Tuesday doing 8 kids' procedures back-to-back at the ambulatory center, all day Wednesday doing post-op followups, and fly out Wednesday night. We can't go to a different doctor because none of them will touch us.
So we have two options. One, fly both kids to New York and have their procedures done through his main office there, where he has more flexibility with scheduling and location. Or two, get Mr. Clod tested for malignant hyperthermia via a muscle biopsy. (Can't test the kids, because it's apparently only reliable past the age of 9 or so.) Assuming he tests negative (which is the statistical likelihood, despite it being a dominant gene,) then the ambulatory center will do the procedures on the kids. The problem with option two is that there are only 5 locations in the country that can even DO the muscle biopsy test, all in medical universities. And setting aside the cost of a plane ticket for him, and the fight to get the test covered by insurance, so far two of the five places have already said they couldn't do it for him any sooner than July.
We're continuing to look into our options. But seriously, God. I've done my time, I've worked plenty hard enough. It's someone else's turn now, yeah? (Actually, I'm thinking right about now is when I get cancer.)
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