I was just so tickled to make the background so pretty and put some pics up I completely forgot to up date the "Skyler situation" . We went down to Childrens today for our yearly Clinic appt (4 months late, but who's counting). We were instructed in August by his Oral Surgeon, who did the distraction a year and half ago, to get a CT scan so he could evaluate it and put together a plan....
wouldn't you know that today was the first time he actually looked at the pics! Silly Silly Dr.
Skyler had his hearing checked. Both tubes are in place, left one seems to be blocked or something slightly as the air didn't flow through it as nicely as the right. During the tests he did good. I love watching him perform and "get" what they are asking him to do. We went so many years not being able to do all these things, that I really enjoy being able to sit back and let him speak for him self, manage tasks they ask etc. Its a relief.
So the results of hearing test were normal hearing in right ear and Mild to Moderate hearing loss in Left ear. Now he had a ear infection a week ago, he's still mending. So we wont really know for sure if its due to that or a permanent issue.
Our ENT says the left tube is close to coming out too, which could also be a reason for loss. (that's why he had them put back in 2 years ago anyways) too many loud WHATS and HUHS. :P
Dr Perkins (ent) also gave us some hope that trachless days may be in the future. A while back he had mentioned to me, after the distraction disaster, a procedure called Tongue Base reduction. Yes, it's what it sounds like. His anatomy is so small that the tongue simply rests against the trachea wall. Literally blocking airway. There is a chance that if they reduce the size of that it could make more room for air to flow freely, eliminating the need for the trach. He said the only issue it could really make was some aspiration issues (swallowing fluids/food into lungs) but not really likely. There seems to be no real risks aside from that to do this procedure. It is painful a two week long sore throat. But our other options are another jaw distraction (upper and lower) an we dread that. and Also an airway reconstruction. They would take a rib graft and place it in the windpipe to help keep up the floppy airway. This is a MAJOR surgery. Like a week in a medication induced coma...mmmm this mama isn't so keen on that. It would probably do the trick, but is SO risky! SO time will tell.
He's also a candidate for Camp Korey this year! Its a week long camp in Carnation for kids with facial differences. Nurses/Dr's on staff 24/7! Mom and dad just have to be ok with the week with out him!
I think that's it. In 6-8 weeks we will hear from his team of Dr's to see what they decided...and we can hope its something successful and possible to do during the summer!
~Casie and Family
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