Day 642 - No AC Again 🥵 = Becoming Platinum Hotel Members 🛎️
Monday, October 3rd, 2022
Woke up this morning and realized the air conditioning unit wasn't working. Obviously we turned the air up before we left town and when we came back last night we turned it back down. It normally takes a few hours for it to adjust. Even though the temperature in the kitchen was reading 78° the temperature near his crib it was reading 89° due to all of the equipment running. It was Dad's day off so Mom texted the landlord and shortly after he said the AC people were on their way. When the AC showed up he let us know that even though 2 weeks ago the issue was the capacitor; it's now the compressor again (that they already "fixed" this year). He was going to have to order a new part to actually replace it this time and come back tomorrow to repair it. Mom texted Dad letting him know we needed to do something (like get a hotel).
So that's what we did! Mom had just finished unpacking supplies from the trip to Jax and now had to repack (quickly). This time without using a spreadsheet, trying to pack by memory! We pretended it was a trial run for an emergency situation. Mom did pretty good except forgetting the glider board for the stroller that would hold the humidification chamber. Well Mom was able to rig up a plastic Fisher Price box with a ton of bungee cords to hold the humidification chamber straight off the floor keeping the water at an even level.
James loved watching Sing 2 although his favorite button on the remote control was to turn the volume all the way down. Dad got some work done in the business center. We then gave James a bath in the big bathtub while Dad held him this time. It was a little easier in the fact that we did his bath during his 30 minute trial off the vent. However the part that was not easy was that since he was doing his trial he was on an HME and that got pretty wet while he was in the bath. If it becomes too wet it will lower airflow through it not allowing him to breathe through his trach. He obviously could still breathe through his mouth and nose but he hasn't really been doing that 100% yet. It is a learning curve since he has been breathing through his neck since he was 38 weeks gestational.
*Uploading a video we wanted to record for a while. It was shot yesterday loading James into the car leaving Jacksonville. There is no information out there on how to do this! When we were discharged from the hospital we were completely clueless on how to get him in the car. There wasn't one nurse or RT that could give us any direction. It's terrifying when you are brand new to all of this equipment and on top of it is the first time driving in the car with your baby after being in the hospital for so long. Hopefully this instructional video is helpful of how to load a car with a trach baby who is ventilator dependent (specifically on an LTV ventilator, on continuous feedings, and with a 24/7 Farrell bag).
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| Napping during his 30 minute trial off the vent |
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