by We don’t venture out often. We really should get more into the habit of getting out and about, but it’s hard – work schedules during the week mean we aren’t all home until 7 pm anyway and AJs cares start at 8, so that rules out weekdays. Weekends Aaron works Saturdays. And by the time Sunday hits Mom needs a break and a few minutes out of the house and an early bedtime. Add to that the oxygen tanks, suction machine and vast array of emergency items we have to carry with us and the fact that he still is struggling with reflux and gas and pukes and has his stomach continuously vented, and he just comes with a lot of moving parts!
Translation: we’ve only left the house for Drs appointments since coming home in August.
Nana took Averie to pumpkinfest in Anamosa over the weekend, so Aaron and I packed AJ up and took him to pick Averie up on Sunday at Pumpkin Patch Pizzazz.
We left the house later than planned, AJ didn’t sleep in the car on the way down, his gtube sprung a leak when we first arrived and had to have the balloon to hold it in refilled, and he was generally crabby and in need of a nap, but we got out! We even managed to stop and eat at Applebee’s before coming home.
We’ve had a rough start to this week, AJs been having some instances where his heart rate drops down lower than we’d like when he’s asleep. His normal resting heart rate is in the 100-120s and it was dropping by half and going to the 59-60s. We talked to cardiology and since he’s coming back on his own and it’s short lived, for now we are just monitoring and on the ready to take him in if it gets worse. Since he’s started this we’ve had night nursing every night. Tonight I’m his nurse. So we will take prayers for a smooth and uneventful evening, and for these crazy Brady arrhythmias to go away!!!
Final note– those who were wondering about shirts, we are working on a new design and will update you all when we have more info!
