Today was 2 big appts in 1 day. First was the pulmonologist. She said his lungs are sounding good and she's a bit unhappy with how high his heartrate has been running. 1 of his meds is changing to just PRN, and then keeping the other twice a day. Hoping that will maybe help his heartrate lower back down. She says she will release him lung wise for surgery/anesthesia. Also she switched his O2 sat monitor to just nights and spot checks. So that's 1 less piece of equipment we have to haul everywhere and 1 less cord permanently attached to Eli!
Then we had his pediatric surgeon. She's changing up his feeds as he's being gaining 5oz a day. Will check in Friday to see how that's going. Then she's going to go ahead and scheduale surgery. The goal is to do 1 big anesthesia with multiple things going on. A PH probe placed, flexible and rigid bronchoscopy, Orchiopexy (undescended testicle/hernia repair), and possibly a central line, depending on what they can get for a line. She is also talking with the new GI in town and seeing if he can do the motility testing at the same time. Eli would be admitted, obviously, for a minimum of 24hrs but with Eli's history everyone assumes it will be longer.
Not looking forward to another surgery but looking forward to be taking our next step in the direction that we ultimately need to go.
Eli is exhausted after being out at appts most of the day. He's finally crashed out on the floor. The older 4 are playing outside and downstairs, Bob's at work, and I'm getting ready to make homemade pizzas for dinner! hoping for a quiet evening as I'm exhausted.