7.25.21 Inpatient 29

Playing a game of wack-a-mole. That is the simile that came up in our meeting with Aimee’s medical team this afternoon. New issues keep popping up as soon as we think we have figured something out. Today was all a recon in response to the 4 times we had to get Aimee breathing again yesterday. Of course, now that we met with them and risk assessment to determine that plan, she had no profound desats today. Oh well, I’m happy she is breathing!

There was definitely discussion of how sustainable this respiratory situation is for Aimee and for us. We don’t know for sure what the right course of action is, but maintaining here while hoping things improve may not be feasible. 

We are moving her around to different bipap masks after a respiratory therapist made a mistake that accidentally created more pressure on an existing pressure sore, which is complicating the respiratory problem even more. 

Unless things improve dramatically in the next couple of days in regards to ostomy output, we will begin a formula change this week. We are going to compromise at trying a less calorie dense version of the real food formula that she already uses. We hope that this relatively small change will be enough. Before we start, we will begin her on a small evening dose of gabapentin to help ease the pain of the switch. praying that this is successful so we can avoid a more drastic change to a sugar based formula.