{video is Wyatt fussing while riding in a modified red VW bug power wheel that he makes go by pushing a button}
If you’ve been following Wyatt’s story for some time, you know, like we do, that Wyatt loves to throw curveballs at us regularly. We have had repeated specialists tell us he has stumped them. Don’t worry, he isn’t changing a thing and the most recent ride he took us on was last week at his MRI.
{Photo of Wyatt giggling, while dressed in his pajamas and sitting in his stroller while waiting for his MRI}
While I was speaking with the nurse and we were preparing to get his vital signs before taking him back to the MRI room, Wyatt suddenly stopped breathing and “coded”, requiring the rapid response team to be called and an all hands on deck approach to his care. He was unresponsive and not breathing. After a short time, we were able to get him on monitors to keep track of his vitals and get him breathing with the support of his BiPAP and oxygen.
We had a tough decision to make, as sedating a kiddo following some respiratory distress presents with risks. However, this incident was exactly what we were there for- answers to why he will sometimes suddenly stop breathing. After some conversation, it was determined that we would proceed with a very conservative approach to the event. He would be intubated (mechanical breathing) and they would perform the MRI as quickly as possible. He would then wake up and recover in the ICU rather than a typical recovery room.
He ended up waking up slowly, which isn’t terribly uncommon for him. When I left him to run down for dinner he was sleepy. I returned to kid who had pulled his IV and was requiring the additional safety of the plastic screens at the top of the crib, so he couldn’t get out. (Insert giggle and eye roll) To say the ICU staff wasn’t quite sure what to make of this patient would be an understatement.
Today I spoke with his neurologist regarding the results of his MRI. The good news is they were able to rule out some big concerns like a tumor or a progressive brain disease. However, they found two lesions on his brain, presumably cysts. The neurologist wasn’t comfortable making a plan without speaking to the radiologist, given the location of the spots. They are on the outside of the brain and she felt a consult was appropriate. After that conversation, we will determine next steps, whatever that may be.
For now, we take comfort that his brain is largely unchanged. This is great news!
{Photo of Wyatt attempting to stand up in his crib, peering over the top rail. Notably absent is his IV, which he pulled himself.}
Our next wild ride is starting school next week! I’ll be sure and update with photos of him on his first day. After I cry.
We welcome continued prayers for his health, especially as he enters school and is exposed to additional germs. We continue to pray for clarity as it comes to supporting Wyatt and ensuring he gets what he needs to continue to develop and grow.
