During the time of his g-tube placement, he had some other hiccups including oxygen desaturations while he was sleeping. We were told they were likely caused by obstructive sleep apnea (OSA). OSA causes you to have a blockage in your airway, causing pauses in your breathing, and your oxygen saturation levels decrease. Typical pulse ox should be 93-100 and Wyatt was dropping into the 70's at times. Often in kids this is because of tonsil and adenoid issues, and is typically a reason to remove them. Typically kids with OSA (and adults too!) will snore, which is a big sign that something isn't right. The only way to diagnose OSA is through a sleep study and there is only one local pediatric sleep lab, so the waitlist was long.
He had numerous hospital visits because of being sick and oxygen desaturations kept occurring because homeboy couldn't breathe while sleeping. You may also be wondering why they didn't just schedule a time to remove his tonsils and adenoids, since it's typically the first line of defense. Well, that answer is two fold. First off, we didn't have a real diagnosis because we couldn't get that unless we did the sleep study (even though EVERY doctor and nurse we encountered observed the OSA events) and secondly, he's really tiny. Tiny kiddos are not good candidates for digging around in their noses and ears because they are so small. So even if we got a diagnosis, they won't consider it until he's older and bigger. Additionally, we learned from the g-tube surgery that Wyatt doesn't tolerate sedation well. It took him a full 3 days to even fully wake up and one of those days was spent intubated because he was so groggy and couldn't wake up enough to breathe on his own. So for those reasons, we continued on with using a nasal cannula giving him oxygen when he was sleeping.
Dude. This kid is CUTE.
Fast forward to February. We were supposed to be on track for the sleep study in April. Well, we got a call in early February that someone had cancelled and they asked if we could make it that evening. We jumped on it. Daddy offered to take Wyatt to his sleep study so Mommy could work the next day. During the sleep study that night, Wyatt had quite a few desats and they were monitoring his CO2 levels. Things got dicey and Brian was woken up by the staff saying they needed to call an ambulance to take him to the ER. Well, then. That's our boy for you-- dramatic. Turns out the ambulance would be taking him to Sinai, which is NOT our home hospital and would delay care by the team who knows him best. Wyatt can only receive care at Johns Hopkins due to the nature of his conditions. We have learned the hard way that taking him to a facility other than Hopkins is dangerous because they do not have access to his entire medical history and because many facilities lack the pediatric subspecialty groups he requires.
... to be continued...
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