I'm so thankful for Carson's attitude and I'm thankful that he's on board with CPAP. It truly is a blessing of his age...with him being older he can help us make this decision (trach vs. CPAP).
I was able to talk with him shortly after we got the CPAP machine, after he had worn it several nights, and he said he would rather wear the CPAP every night and get his trach out vs not. I TRULY am thankful because his trach really only limits him in water activities. BUT...every year, that seems like a little more of a hindrance to him and for that...I will get on board the CPAP train too! : ) And while I have drug my feet and complained to God and had my moments of heartbreak as I help get his CPAP set up at night...Carson has not complained ONE TIME. He has asked questions so he understands it all but hasn't seemed to mind it at all (other than he doesn't prefer the nasal wisp mask...but even that he tolerated)! I love this kid and his brave, courageous heart : )
For the scopes...His airway was about the same and CPAP will hopefully be his ticket for decannulation. While I was hoping for a miracle and great news that his airway looks bigger...this news was what we expected. There is one level of narrowing that seems to be more from a lack of external support than really much they could do surgically. The supraglottic area just tends to collapse and this is a problem at night when your resting muscle tone is lower and everything tends to collapse a little more. But the surgeon didn't feel anything else is necessary because he is so functional with capping during the day and surgery doesn't guarantee anything. Preston and I both agree!
While, I can let doubts creep in and wonder if some of the surgeries we've done were for naught. I can also rest in the fact we have always done what we thought was best at the time, we gave it a shot, and Carson's airway has come SO FAR since we first started going to Cincinnati. We started with multiple levels of stenosis (narrowing) and now it is just one. He was initially trach dependent and only had seconds before an emergency without his trach. Now, he has slept all night without his trach and been fine. And is at no risk of death even if he didn't have CPAP one night. It basically just boils down to moderate sleep apnea and he needs CPAP to provide adequate rest/sleep. I will continually turn back to these truths. And, I believe we see God work most when all our other options have run out. So, I will continue to watch for how God may heal and see what he has to show us through the miracle of all that is Carson!
Our immediate plan is to have another CPAP sleep study. Unfortunately, when I called a month ago to schedule this...their first available was October 10th. I asked if they could bump this up and they said they couldn't but told us that the waiting isn't completely wasted because they require a 3 month CPAP use trial before they decannulate anyway. So we will continue using CPAP. (We've had it a little over a month now but I wasn't leaving it on Carson all night because of school and end of year testing) So, now we will attempt to use it all night, each night until we are able to have the sleep study. I do have our name on a cancellation list and I'm calling weekly to check for cancellations (squeaky wheel idea...Ha!)...so maybe we will get in a little earlier.
Currently, our only issue seems to be pressure points and long lasting redness on the bridge of his nose from the CPAP mask. Otherwise, from everything we can tell...he is doing well. We shall see what the sleep study shows and as we use it all night, if Carson seems more tired or has anything else to report.
Again, as I said...I am so thankful for Carson's attitude (not to say that in the heat of the moments we don't see frustration) but at the end of the day, may we all be able to answer this question like Carson did.
"If you could be anyone in this world, who would you be?"
And his answer was, "Myself."
My prayers going into the summer and this next sleep study this fall...
1. That CPAP will be an option.
2. That his pressures don't have to be tweaked much. (If they do, we will have another 3 month trial period)
3. That we get the mask fit figured out and
4. That the boys have a fun summer, full of all the things they love (& maybe get some stuff accomplished too!)
Sidenote: Carson did well with the induction process for anesthesia, as far as we know. Even though it didn't happen entirely like we thought it would. They have done away with induction rooms since COVID but we were able to walk back to the door of the OR but left him at that point. Our understanding was that if Carson chose to get an IV in preop, they would put him to sleep with an IV medication instead of hooking something to his trach. However, Carson said they still hooked something to his trach before using the IV. Frustrating to me but its hard to know what exactly happened since we weren't back there with him. I do have a call in to talk to someone about it. Thank you, thank you for the many thoughts and prayers that are sent our way! <3
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| Our first time at the newly expanded Ronald McDonald house...so we had to check out all of the new spaces! |
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| Rooftop terrace at RMH |
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| Last day of school pic (May have been taken a few days after the fact!) |
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| Awards ceremony the day before we left! |
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