You know those youth lock in’s from “back in the day?” (Or maybe they still have them.)
Regardless, the Mr. and I had a Mattie Boy Lock In this weekend. The PICU calls it something else: “Parent Care Something or the Other.”
I call it a “Mattie Boy Lock In.”
Mom +Dad +Mattie +48 hours alone in the hospital completely responsible for his care = WE GET TO GO HOME
AND WE PASSED!
It probably wasn’t “Pass/Fail,” but more an opportunity for us to become very comfortable with caring for Mattie while having the security of nurses and doctors close by if we had questions. But because I’m the competitive type and like to win, I prefer to think that we PASSED!
98% of the time everything went smooth as silk. We kept track of Mattie’s med and feeding schedule, administered all his meds, did all of his trach care (including a trach change), gave all of his GJtube feedings, and so forth. The first night was nearly effortless. Mattie slept well and was only awake from 1-1:30AM doing his famous leg kicks and lip smackin’. We took a peek at him, and he smiled so big as if to say, “Hey, you’re still here!”
Last night he slept from 11PM-4M, when we were awakened by an alarm (not untypical) indicating that he was having a breathing struggle. Typically his respiratory struggles just mean that he needs to have his trach suctioned due to a build up of secretions. Well, last night because he had slept such a big chunk without waking, when he did wake, he had a pretty hefty amount of secretions which were blocking his airway.
Thanks to amazing training, we assessed the situation very quickly and made the decision to “bag him.” As horrifying as this sounds, it’s not that bad, and I’m so glad we had the opportunity to do this under pressure last night! “Bagging” him simply (or not so simply) means, removing him from the ventilator and using a “bag” attached to oxygen to hand deliver breath support to him through his trach.
Now before you think we’re all sorts of special. The thought of having Mattie “bagged” used to terrify me, but it’s really not that big of a deal now that we’ve been around it enough and see the effectiveness.
So back to last night. I popped Mattie off the vent, John popped the “bag” on his trach, and “bagged” him while I cleaned the ventilator of built up secretions that were blocking his airway. The nurse heard the alarms and saw us turn all the lights on and apparently came into the room, but didn’t interact with us until we were done.
Mattie calmed immediately, I reconnected him to the ventilator, he flashed us a big ole’ smile, and the nurse told us that we had done a great job. It all happened in less than 3 minutes.
Other than that, the rest of our time was spent snuggling, getting organized, writing a truck load of thank you notes, and just soaking in the fact that OUR BOY IS REALLY REALLY COMING HOME!
Oh and did I mention that we got to take Mattie OUTSIDE FOR A WALK on Sunday for the first time EVER. Yes, for the first time ever, our sweet boy felt the sun kiss his face and the fresh air blow across his precious curls. For the first time every, his eyes saw the blue sky! It was magical.
First rays of sunshine! Big smile!
Hey, I like this!
Awww, this feels so good!
In front of Children’s Mercy!
Mattie’s first trip to the playground!
Playing the piano!
So sleepy from all that fresh air and beautiful sunshine!
So TOMORROW is the big day! Our boy will be HOME. Stay tuned for the most fantastic update of all time! (Can’t promise it will be tomorrow.)