Day 341 - Decrease in Pressure Support #s!
Monday, December 6th, 2021
Today we had our monthly pulmonology appointment for James' 2 synagis shots. Mom, Dad, and our Nurse went along for the trip out. While we were there we asked about making adjustments to his vent settings since he seems to be tolerating everything so well. The doctor decided to decrease his pressure support from 22 to 20, which is great! Mom gave the Doctor the list of things the Speech Therapy office required faxed to them in order to schedule a PO Evaluation appointment. As they were taking care of that, our Pulmonologist asked us if we received the custom length trach yet. 😂 We let him know that we had been getting the run around from our DME and insurance regarding who was responsible for the next step which is a Peer to Peer evaluation. Mom thinks they are both liars. And no one in the Facebook is of any help on this topic. 😫
He let us know that by now James probably needs another scope done by ENT. He is growing and so is the length of his trachea. The Pulmonologist does not feel comfortable decreasing the PEEP without having the appropriate length trach due to his tracheomalacia. So even though we have been getting by with the same old 2 trachs since June that we wash once a week... Now, not receiving a new custom trachs is preventing James from getting a lower PEEP, and essentially one step closer to getting off the vent. Mom is hating the Insurance company and DME even more now. 😡
James' new obsession has been water bottles, especially when it's cold to put on his gums.
Our appointment was in the late afternoon so by the time we got home the nurse needed to chart and leave. We ended up doing his 1 hour of eye patching in the evening super late. Dad played guitar to distract James from pulling it off.
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