Welcome back to The Carr Ride. I mentioned the "bumpy roads" when you jumped in so I'm sure none of this will surprise you...so here we go. When I intentionally delayed in sharing news on big man's latest surgery...that's 11, if you're counting...I was waiting for the proverbial shoe to drop. What I didn't realize what a whole Shoe Carnival would be dropping...on my head. No, for real.
On October 11th of last year, Zane went in for a routine tonsilectomy/adenoidectomy, due to the incredibly large size of his tonsils, snoring, and lack of restorative sleep. But as is usually the case, nothing ever quite goes as planned for Z. Dr. K (original surgeon that has been navigating his healthcare since arriving in the states almost 10 years ago) had stated that they just never know what they'll find when they take him into surgery and decided she should at least double check for any obstructions or issues, since he was already going to be under anesthesia. You'll remember that Dr. K was the one who found an entire pencil eraser up Zane's nose during his first surgery...that supposedly he did NOT put in there. Man...we've got to beef up security at our place. Crazy eraser-poppin' people are just plain menaces to society. Any-hoo...she'd no more gotten him back and put under than she called us from the OR. She said although she still thought the tonsils/adenoids should be removed, it would not solve his issues completely.
Because...as you can guess...they found another problem.
Of course they did.
To understand fully, you'd have to remember a few surgeries ago/few years ago, Zane had a jaw surgery to create somewhat of a temporary solution to the lack of a right mandible. At the time, they sliced open his jaw and inserted a crank (that extended out of his neck) that we had to crank daily to create space into which bone would grow. It was an absolute blast. :/ Side note: you'll also remember that when I asked what happens if/when the crank falls out of his neck, I was told, "It's not possible." Ok then. And yes, of course it did. So, a second surgery was done to reinsert the crank. This was all done to give the right side of his face some temporary structure, but the ultimate plan would be to do another jaw surgery once Zane is done growing (roughly 18 yrs. old), when they'll match the new jaw to the left jawline.
Back to the phone call from the OR. Dr. K said that basically Zane's tongue is too big for the current size of his jaw. Maybe some of you anatomy gurus already knew this...wait...do anatomy gurus read the Carr Ride?! Hmmm...I'll assume no one here falls into that category and proceed accordingly. SO apparently, the mandible is responsible for "holding the tongue in his place," among other things. For all practical purposes, Zane doesn't have a large enough bone on the right side to keep his tongue under control. (ahem...) Here's the problem...when Zane is sleeping, his tongue is rolling back (unconstrained by a right mandible) and closing off his airway. Yea so...I guess that's not good. This is likely the bigger cause for his sleeping issues...obviously. The plan was to let him heal up and proceed with a sleep study so we can see exactly what we're dealing with.
We tried to have him sleep with a tennis ball behind his back so he wouldn't roll over to that right side...but this gave him all sorts of back pain. Then we tried to have him sleep propped up...but he moves so much because he keeps NOT BREATHING. Ugh. And the sleep study? Scheduled last November...for May. Good. Grief. So...we just pray and trust in God's protection.
Once the sleep study happens, all of Zane's surgeons (Oto, Ears, Jaw, Ortho, Endo) will be gathered to discuss the best way to move forward. Does Z get a CPAP or do we push up the jaw surgery to fix the problem, knowing we will likely have to do a 4th jaw surgery once he stops growing, or do we come up with some other bandaid for now?
But while we're on the "can't seem to catch a break" portion of our story time, I might as well mention that when we went in for the post-op appt in November, they decided to take a look in the ears, as they are prone to do, just to make sure everything stays healthy in the "good ear" and clear in the "new ear." In short, Dr. K was attempting to remove some hardened wax very near the ear drum in the new ear. When she tried to do so, she realized that the prosthetic stapes bone that Dr. Hansen placed last year was protruding from the ear drum...the body rejecting a foreign body, as can commonly occur. The wax was holding it in place. Sorry, but it's true. Sadly, there is no way to salvage this and will have to be redone. We went back for another visit with Dr. H to see how to proceed. He's reluctant to do anything at the moment for a meager 20%-max hearing increase. Chris and I have definitely noticed a decrease again in Zane's hearing, so it's set him back for sure...but Dr. H doesn't want to put him back under just for that. SO...next time Zane is under for whatever is next in line, Dr. H will go back in and place a new stapes bone, and we'll try again.
Lastly, we also recently visited Endocrinology to see if there's anything we're missing in regard to weight and height gain. It was not without its moments, but we will check back with them in 6 months. There are some concerns, but nothing urgent.
Dear Lord...actually, that's it. All we can do is call on the unshakeable and unmistakable name of the Almighty. May His sovereign hand continue to guide and shape this young man...and his parents/siblings...for His glory and our good.
