Wyatt James: Sleep Study Update, Photos, and Other “Stuff”

We got the results back from Wyatt’s sleep study. Turns out, he didn’t do so well. The sleep doctor who interpreted the study was terribly alarmed. Thankfully his pulmonologist was able to talk her through his case and eased her fears. She brought up a trach again, which was shocking to us. We have a plan, but that plan involves going back to presurgery settings (which are high, even for a grown adult) and monitoring closely. He will see ENT again to determine if there may be scar tissue impacting his airway, and we will do a repeat sleep study. There were a few variables that likely played a fil in his poor study, including being diagnosed the next day with an infection, no humidification on his machine, and starting him low for the titration instead of starting high and going lower. We will continue to watch to be sure he’s breathing safely and will reassess after the next study.

{Photo of Wyatt, laughing while wearing his Dino pajamas and with one hearing aid out of his ear because he can’t keep the darn things in his ears}

This week we have a swallow study consult scheduled for Thursday morning. This study will show what texture of foods are safe, given his uncoordinated swallow. Mama is a little nervous, since it involves pushing him a bit with foods and choking is probably the scariest thing I can think of (which is saying a lot, since he’s a medically complex kiddo who has been through lots of scary things...). We are supposed to bring food, so I’m not sure if the appointment will include the actual study or just some practice with food.

{Photo of Wyatt in a tropical onesie, trying to eat the remote control. The remote control seems to be his favorite thing to try to eat!}

This weekend Wyatt had a bit of a scare while we were at a friends house celebrating her daughters birthday. He had a seizure. This is a little alarming, as his seizures have either been due to a fever, or have been staring spells (partial complex seizures). This seizure was all four limbs convulsing upon waking up. We consulted with the on call neuro who felt like it was okay to keep him home and monitor. We followed up with his primary neurologist who wanted to increase his Keppra. We will continue to monitor and attempt to get it on video if it happens again. It’s easier for her to tell us what may be going on if she can see it.

{Photo of Wyatt, upside down, laying in the middle of wood floors, in his new house!}

We are hoping to settle on the new house in the middle of July, but Wyatt had the opportunity to lay on the new floors. We were in the house when he had an unfortunate diaper issue, so he had his first diaper change. And since we weren’t ready to have that mess on the carpet, he got the royal treatment on the living room floor. As you can tell, he didn’t seem to mind the freedom the empty room gave him. We look forward to so many adventures in our new home.