Carson had the sleep study done on Sunday evening...we were so proud of him!! He was not a fan of the 100 probes (maybe not 100 but it was ALOT) placed on his head, chest, & legs, the straps & probes. But he did well getting them all on (it took almost an hour just to get ALL of them in place)! And although he got teary eyed a couple times, he stayed as relaxed as possible and went to sleep in a relatively short amount of time. Let me tell you, I have no idea how they expect you 'to sleep like at home' when you feel strapped down to the bed & machines. He especially hated the nasal cannula sensor in his nose! Preston stayed with him over night and he said Carson did pretty good but that the sleep tech uncapped him in the early morning hours. We didn't get full results until Tuesday. Carson had about a dozen partial obstructive events while he was capped. His index number given (from results) was 2 (normal is 1.5 or less). I think alot of it is positional...they uncapped him because he seemed to be working a little too hard to get adequate breaths. But all in all, the doctors were fine with the results & didn't see anything that was a game changer.
Wednesday morning, he had a scope with the pulmonologist and ENT. They saw basically the same thing as last time but they spent more time looking and discussing. The areas of narrowing/obstruction are above his vocal cords (the area of reconstruction looks great!). I was hoping they would do any intervention needed while he was out this time but they want us to schedule the next surgery in the next couple months. There are two areas that they want to work on...one area is just above the vocal cords and they want to suture this tissue back and the other area is tissue just above his epiglottis that they will remove with a laser.
While, I wish we didn't have any more surgeries....all of this info is consistent with the sleep study and what we see during the day with noisy breathing during normal activity. However, like the doctor stated, 'this is nothing that you would find in a textbook.' 'We are making our best educated guesses.' It shouldn't surprise me that Carson is so unique but it shows HOW unique his airway is when you hear this from a doctor who has been doing reconstructions for 30-40 years & sees patients from all over the world. As a couple friends said 'Carson is blazing the trail and opening the path to healing for others as well.'
As it often happens, we get through all of Carson's appointments & surgeries and as we head back home, Carson is usually asleep in the car (sleeping off anesthesia) and I dissolve in tears. We stay strong and are so thankful for being at Cincinnati Children's with the immense experience that their team brings but golly, I wish Carson could just have a break from all of it. As I look at his sweet face in the car, that resting face of an angel...my momma heart breaks. So we take it one surgery at a time & I try to keep my wishful timeline out of my head (the one that gets his trach out before school starts & before summer). Because all I really need to do is stay in the moment that we are in. Carson will be fine, trach or no trach, as he shows us time and time again. I sometimes wish that we could have an in depth conversation about how he deals with the pain & suffering and that he could tell me, he understands why we are doing it all and he is fine. Ha!...what am I thinking...ONE, no male in my family is much of a talker and TWO, while Carson doesn't TELL me he understands and that he is okay, he SHOWS me in his actions and how he may cry and get mad in the moment but then he is over it and on to the next 'normal' 5 year old activity.
Thank you so incredibly much for the prayers that sustain us in the long, tiring hours of hospital trips! We hope you all have a very merry Christmas...Carson and Kellen are SUPER pumped!
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| An indoor playground...such a life saver on the COLD days! |
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| Festival of Lights at the Zoo |
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