Day 344 - Trach Change, Supply Order, and Safety Check ✅

December 09, 2021

Thursday, December 9th, 2021

No nurse Thursday, is kinda a break for Mom. Kinda. Mom held James a lot, didn't have to worry about giving report, or keeping someone else entertained besides James. Although there's not much else you can do with no nurse because you're busy with feeds, meds, venting, therapy, eye patching. Once in awhile you're able to grab something to eat and maybe use the restroom (with the door open because you need to hear alarms). Oh yes. 🚨 🔊

Dad was able to step in a help during eye patching with a a few songs while he had a 20 minute break. If there is anyone good with guitar that knows the trick to playing nursery rhyme songs with the same chords please let us know. The woman at the hospital who did music therapy was really good at it. Mom put on a quick YouTube tutorial of silent Night basic guitar. Dad is a quick learner although trying to play new chords while reading lyrics is a little tricky! James is a great audience! 🎸 🎵 🎶

Mom confirmed our monthly supply order over the phone with our DME for respiratory. They also let us know that "there is no update on the trach". Yeah,we get it... you guys are just pretending to try.

In the evening we did a trach change and James was not about this one. He was very irritated, did not like being swaddled, and was teething really bad. Mom decided to give him some Tylenol to make him feel better and so we could get the trach change done. The change went smooth. Now it was time to change the circuit because we do that every 2 weeks. This is all of the tubing that goes from James' trach to the ventilator.

In order to do a circuit change we transfer James to the backup travel ventilator. Not everyone does this because not everyone has a second backup ventilator. In that case they have to move very fast, reconnecting the circuit to the trach, screwing in two pressure tubes one at a time, connecting the exhalation tubing, as well as replacing the humidification chamber, filter, multi adapter... It's just too much to do and James can not be off the ventilator for that long. This is why we transfer him to the backup ventilator and take our time setting up the home ventilator.

However when we went to go get the backup travel ventilator in the closet, we found that it was never plugged in from our appointment on Monday. The way these batteries work is that if they are not connected and charging 24/7 they immediately drain even if the ventilator is off. Doesn't make sense, right?! So the backup batteries and the ventilator was dead. We would have to do a circuit change tomorrow once the vent was charged. Another thing to add to our safety checklist!