A few weeks ago, we went to see my ENT, Dr Muntz. He and Mommy discussed what the future holds for me and my trach. She let him know that months ago I accidentally fell asleep with my cap on overnight and there weren't any issue. In the past he didn't recommend having a sleep study but with that new information he does now. According to Dr Muntz, If I really do sleep with a cap without a problem, then the only other reason to leave the trach in would be for surgeries and if that is the only reason there are other options for intubating. So today, I checked in at Primary Children's Medical Center at 8 pm for a sleep study. Mommy had brought a few new toys which came in handy while the techs took over an hour to get a baby hooked up for his sleep study. Then it was my turn and I was very good while everything was connected. But when it came time to put the nasal cannula in my nose, all bets were off. The tech let Mommy know that unless we got the nasal cannula in then there was no point to doing the sleep study so they made a plan to put it in my nose once I fell asleep.
It was almost 11 pm before I fell asleep and eventually Mommy was able to get the nasal cannula in but apparently it was not exactly where it needed to be and the tech came in to move it to the right spot. That woke me up and man was I pissed! It took almost 45 minutes for Mommy to get me back to sleep and get the nasal cannula back in. But just a few minutes later, I pulled it out in my sleep. And so we did this dance multiple times over the next few hours until around 2 am, Mommy and the tech called a halt to the sleep study.
Although I didn't have the cannula in for long periods, during the times I was capped everything looked great. I just hated the nasal cannula and I didn't want it in my nose under any circumstances! At this point we are just waiting to hear back from Dr Muntz on what would be the next steps.
Peyton Nicole Smith
