Update

Today was a good day. A yoga pants, t-shirt, ponytail kind of day. And especially a no doctors appointments kind of day.

Grayson’s three appointments this week were all really good. I got most of my questions answered and feel like we have  plans in place going forward. A quick summary:

Pulmonology: This was our first time seeing this specialist. I loved her. What I loved most was she seemed genuinely interested in Grayson’s story- the whole thing. She asked questions. She tied her recommendations in with other specialists and Mitochondrial disease.

Basically, Grayson is at risk for lung issues because of his low muscle tone. She suspects his lungs are healthy right now (we did a chest x-ray after the appointment to make sure) but we need to do everything we can to keep them healthy. She gave me several suggestions- some therapies to do on him daily, a prescription for Nasonex, and had me agree to get a Nose Frida and use it every day. Snot-sucking here I come! We also need to be very careful that food/liquids aren’t getting into his lungs, but that’s a GI issue

GI: Nothing drastic. Because G is still vomiting daily, he’s still on continuous tube feeds. The good news is he is gaining weight and height fantastically (20 lbs 11 oz, 31 inches). Dr. N did order another swallow study after I told him G isn’t eating or swallowing at all. He laughed when I asked how they do swallow studies on kids who don’t swallow. No, seriously- how do they? I didn’t get a totally clear answer- something about thick liquids and pudding. Hmmm…tried it. GOOD LUCK- ha!

Neurology: We talked about the headaches. The head-grabbing has gotten less frequent over the last few days, so we are not going to do anything right now. After he reviewed Grayson’s biopsy report, I asked Dr. R what he thought about G having Mito. He said, “It looks like that’s the direction we are going.” He then said he wanted to order the big, expensive genetic test- eek! I knew we would probably be doing it at some point, but I thought the geneticist would order it in a few months.

Since we learned about this test, which will hopefully let us know the gene or genes affecting Grayson and thus give us specific directions for treatment, therapies, and future family planning options, I’ve been really nervous about the cost (the geneticist told us it was about $25,000) and if insurance would cover it. This morning, I anxiously read the 17 test codes to the insurance agent to see what was covered. Guess what? It is! 100%!!!! I am thrilled of course, but also still nervous- I have a friend who’s having issues with her coverage for a similar test with a different lab, even after being told it was covered. But I did get a confirmation number and the person’s name that I talked to, so I am being optimistic.

I think I will take Grayson tomorrow to get the blood drawn. The test takes months and months to run and get results, so the sooner we get the blood drawn, the better. I just hope we don’t run into any logistical/insurance issues at the hospital or people who don’t understand what’s being run (this has happened several times before).

Hopefully after tomorrow we can have a break from medical stuff for a few days. Next week is Ryan’s spring break, and we are planning to have a fun, relaxing week!

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5 thoughts on “Update

  1. you even made me nervous for you when i saw the test was $25,000. WOA. yayayyayyayay for awesome insurance!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! how awesome that grayson is 20 lbs 11 oz now!!!!! i'm happy [for you, not me] to report he is bigger than blaine. spring break will be so great! enjoy every minute!!

  2. I am also surprised your neurologist is running the test. Matt's neurologist did a basic mito test, but he is leaving all the very expensive testing to the mito doctor. I really hope you guys get answers.

  3. New here coming over from PAIL .. my son is tubefed too and used to be a major puker to the point of having a gj tube … what helped us was actually getting off formula and onto what's called a "blenderized diet". No clue if it's an option for you (we deal with other issues, but not mito) but I figured I'd toss it out there because most doctors won't bring it up. Formula was a major issue for him, so this has been like magic.Hoping you guys get answers.

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