by Today AJ decided he missed the local first responders and didn’t want his mom to attend her meetings, so naturally he pulled out his trach when nobody was looking. When AJ pulls his trach it’s a pretty big deal – he doesn’t have an airway above where his trach goes in, and the airway that his trach normally holds open likes to “swell” closed, so without the trach in he really can’t move oxygen much at all.
Shortly after all the medical personnel left. Still a little pale
By the time I got upstairs he was beyond blue and unresponsive. His nurse worked on calling 911 and getting his trach ready and I got the oxygen and bag going. Our local first responders were amazing and here within 5 minutes. His trach was changed and he started to pop back to his normal self not long after, so we declined the ambulance ride up to the university when they made it over.
Needless to say, I spent most of the rest of the afternoon in close quarters getting in some baby snuggles until he had enough energy back that he didn’t want to stop and cuddle anymore. When the adrenaline rush wore off though, all I really wanted was a good nap and I kept falling asleep on the couch trying to type an email to his ENT team to request new trachs. I must have looked tired enough because Averie offered to make dinner. Ham and cheese “quesadillas” worked perfectly!
Can’t say I ever thought I’d be at a place in my life where one moment I’m bagging my kid and talking to 911 folks and the next I’m back to life as normal and waving off an ambulance for a kid who wasn’t breathing on his own just a few minutes ago. It’s a little surreal.
We did talk to CHOP last week about his next visit. We are currently in the early stages of planning an August trip out there. The complicated part will be figuring out the transport, and the odds are high that we will have to drive out and back. The trip out there will be for a triple scope — checking out all the components of his airway to see if there’s anything that needs to be addressed before doing a reconstruction. That means pulmonology, GI and ENT all at once. Definitely not looking forward to the drive and coordinating all his equipment and when to stop to refill tanks etc. We are holding off on planning anything much until we have concrete dates though, as we all know things can change quickly. Once we know more, we will share.
For now – AJs gone to bed early tonight thanks to the crazy day, and moms throwing her hands in the air and being done with work things and aiming for some sleep too. Here’s hoping for a less eventful day tomorrow!
Best daughter award – presenting the dinner she offered to make.
