Day 414 - Speech Appointment with Passy Muir Valve

Thursday, February 17th, 2022

We had a speech appointment this morning at the hospital.

When we arrived we had another oxygen tank mishap. This time with a different nurse. Essentially she didn't do all the steps to turn the oxygen tank on when we loaded the car. Mind you, we've been going to appointments for 5 months. Not only that but this is some basic nursing shit! Isn't the nurse's duty to protect the patient's safety, to do no harm?! So for the entire drive to the hospital and James wasn't getting any oxygen. Mom found this out when she was placing the tank in the stroller, unloading the car and saw it was still set at zero. Mom let the nurse know she never turned it on. No apology, she didn't even respond. 😑 Mom is so over it! Thank the Lord James is on a low flow and is stable.

So the purpose of the appointment was for James to be able to use his Passy Muir Valve. Unfortunately since there are so many different kinds of PMVs the therapist did not know how to connect this to James' circuit. We tried a few different ways but nothing would fit. So after some research we found that there was a step-down adapter James needed in order for it to attach properly. Ordering this adapter from the DME supplier would probably takes weeks if not months. During the appointment we decided to give James some tastes of Pear. We are starting off with Gerber First Steps. James seemed to love it! We left the appointment with the goal to get an adapter and reschedule.

In the afternoon, Mom and the therapist researched online for these adapters online and they found out they are only about $30 from a medical supplier. So Mom purchased this online and the therapist also put in the order for the adapter with the Pulmonologist who would submit to our DME. Wonder which one will get here first! 🤔

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...

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