Day 427 - Pulm Appt & Nurse Messes Up Meds

Wednesday, March 2nd, 2022

Our day started out with our nurse giving James Sodium Chloride even though the order was to hold for one week and then get labs to evaluate. We are going for labs tomorrow. Mom tried explaining this to this nurse but it was very confusing to her. 🤦🏻‍♀️ The nurse just kept repeating herself saying, "we don't have an order to discontinue". No, not yet but the word "hold" means "refrain from". Well the nurse had already put the medicine into his feeding bag, so we had to dump the entire bag. We didn't know how much actually got to him, which could mess up his labs tomorrow. Of course none of this was charted in the nursing book. No apology, no ownership, just blaming the other nurse for "miscommunication". 😂

We had a pulmonology appointment in the afternoon. Originally they wanted to cancel this appointment because James was no longer getting synagis shots. Our insurance was only going to cover 5 injections, since the State of Florida has no RSV cases currently. The reason the appointment was reinstated is because Mom let the office know that the doctor needed to assess James with his Passy Muir valve. Although it turned out that the doctor didn't want to see it at all.

No changes on the vent settings today. Good thing we had the appointment so we could get clarity on a few things.

1. Found out that we won't be having pulmonology appointments for 3-4 months at a time now instead of monthly. Our next appointment is in June and that is the soonest that James will have a wean on the ventilator. 😥
2. Mom let the doctor know that James is tracheomalacia had healed and James was now on a standard size trach.
3. The infant ambu bag that James has is suitable for him. 
4. The pressure support at 20 is his main concern currently. This would be the first number he decreases.
5. Mom let them know that one of our ventilators is making a high pitch pressure noise. She is concerned. They informed the DME company.

This is James' progress so far on weaning ventilator settings since the PICU.

Aug '21- PEEP of 10

Sept - PEEP of 12

Oct - ---

Nov - PEEP of 10

Dec - Pressure Support 22 to 20

Jan '22- ---

Feb - PEEP of 8

Mar - ---

Apr - 

May - 

June -

Evening Passy Muir Trial

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...