Day 273 - James is Not Feeling Well 🥵

Wednesday, September 29th, 2021

Today James had a fever, chest retractions (where his lungs are over working), and a lot of yellow secretions. We gave him two doses of Tylenol in the afternoon and debated whether or not to call the doctor. The thing is, they were most likely going to have us come in or go to the ER. We wanted to wait until after the Tylenol kicked in. He ended up feeling better after the 2nd dose at 7:30pm.

His "Low Minute Volume" alarm was going off constantly. Sometimes an alarm doesn't mean what it says. LMV typically means there is a leak in the circuit around his trach. So Mom inflated his trach to the full 2MLs, but this didn't help at all. She looked at the FB group for answers and it looked like it was very common to have this alarm constantly go off on this ventilator. But randomly out of nowhere? It didn't make sense. Either way we needed to change the parameters on the vent to stop this alarm from going off. James was satting fine with his oxygen and heart rate so we weren't worried.

In the evening, we performed a trach change. Due to James being sick, we did this a day early. We also wanted to change out his entire circuit to sanitize everything. Here is a list of everything that had to get changed in order from James to the ventilator.

1. Trach
2. Ballard
3. Omni-flex
4. Tee adapter
5. Circuit
6. Humidification Chamber
7. Tubing Circuit
8. Air Filter
9. Adapter

You want to build as much as this as possible before popping James off to change it out. Even when switched out as fast as possible it still feels like forever. There are 7 things to be disconnected and reconnected during the "pop off", and that's between 2 people. They say to hold your breath as you're disconnecting your baby from the oxygen so that way you know how long it's been. 😳

So we changed everything out but then the DISC-SERV alarm went off and kept going off. It started around 10pm after the circuit change. We troubleshooted everything. The FB group didn't have the answers for this, a bunch of suggestions like "water in the pressure sensor tubing", "disconnection in the circuit", "crack in the filter", or "bad threading where the sensors met the vent". (Below is a photo of a cheat sheet with what the alarms really mean - to troubleshoot). Tried everything, nothing helped. This was a brand new circuit! At 12:30am, Mom pulled up a chair to sit next to the ventilator and hit the silence button every 2 minutes. We made the decision that Dad would sleep in case we needed someone to drive to the ER. Mom called our DME and their on-call operator picked up. The operator said she would alert the on-call RT and that he would call us back or show up depending on what was needed. Two hours go by, 2:30am and we still haven't heard from anyone. James is fine but the ventilator is alarming constantly. Loud enough for our neighbors (we're in a townhouse) to be concerned or at least be super pissed. 

TO BE CONTINUED...

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭