Day 405 - James' Tracheomalacia Has Healed! 🌟

Tuesday, February 8th, 2022

We had a very early morning appointment to get into ENT. Mom, Dad, and our nurse went along. We were able to meet with our favorite ENT Doctor who was a ray of sunshine compared to the Doctor we saw for his last visit. 

The ENT Doc immediately asked everything to be set up for the trach change. She then asked, "Okay, who is doing this with me?". Mom jumped right in. The Doctor and Mom did the trach change on this tiny fold out chair that we laid James down on. It was quick but Mom and Dad has their routine trach changes down pat, so it's always awkward doing it with someone new. Mom held the trach and the Doctor took off the ties. She doesn't do trach changes that frequently so removing the trach ties with gloves was kinda difficult. We counted to 3 and then Mom removed the trach. The Doctor put in the new trach with no issue. Mom reconnected the oxygen. 

We then moved James to prep for the scope; Mom was holding him sitting up. Once we disconnected his oxygen again she went down with the catheter camera to look at his trachea. She said, "Everything looks good, I don't see any tracheomalacia". Yay!! It has healed! It is such good news, because that means James can stay on the standard size trach. These will be so much easier to get from other Trach Moms or eBay if necessary, if insurance never kicks in to help.

Leaving the appointment we were getting into the car and our nurse was having trouble with the oxygen tank. She started turning the t-handle which you do NOT do when it's still on! It's like she just forgot. 😳 When we are going in and out of an appointment we don't need to touch the tank all. It's only when we are at home, we need to turn it on and turn it off. Mom let her know she didn't need to touch the t-handle at all. 🚩

Dad took everyone thru Starbucks for a treat because of the good news we received at the appointment! 🍪 ☕

Then when we arrived home. As we were unloading the car, the nurse again unscrews the t-handle on the oxygen tank. This time she did it all the way, making a loud hissing noise. The tank was about to become a missile! We told her to stop and we both got that immediate feeling of WTF?! 🤬🤯 Mom let her know (again) that that is super dangerous and that she's not supposed to touch that while the tank is on. Mom then took James inside in the stroller with the ventilator and asked Dad to watch her (the nurse). Pressurized oxygen may turn the tank into a dangerous projectile if the regulator is removed while it is on. She could have caused considerable amount of harm. It was odd because she has gone to several appointments with us before; moreover, very concerning because as a nurse of 10+ years she should know how to work an oxygen tank. It could have been that she was tired taking on extra shifts with other patients, both day and night. This is why our other nurse sometimes calls out, because she is "tired". In this line of work, maybe it is safer for the patient (and for the nurse's license) to just call out. After this, Mom didn't even need to say anything to Dad because he now knows the feeling Mom has on a weekly basis working with home health.

In the evening, Mom took some photos of James' nebulizer treatment. He gets Pulmicort twice a day. His t-adapter needs to be rotated 90° so that the neb kit can be inserted in the bottom. We use his lion stuff animal to lift the treatment up since it's the perfect height. Sometimes James will pet his lion 🦁 as he falls asleep. Video below. 👇 It's a fine line between lifting too high and drowning James (rainout) or lifting too little and bending the oxygen tubing causing a kink and restricting air flow. James will typically choke when too much condensation builds up and water goes down. At that point we need to stop the nebulizer treatment by turning off the air concentrator and turning on the suction machine and suction him. We noticed that we've had to do this recently since the weather has changed; more condensation builds more frequently.

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...