Day 370 - Pulmonology Appointment for Synagis Shots & Passy Muir Valve
Tuesday, January 4th, 2022
James had his pulmonology appointment for his synagis shots in the afternoon. This was the first time going to an appointment with our Tuesday nurse and it went very smooth. She was very proactive and just knew what to do! There is a fine line of helping pack up the equipment yet also keeping an eye on James. Seems simple, but Mom has had her fair share of experiences with nurses, so she had pretty low expectations. Mom was very impressed with her though and will most likely try to schedule all appointments on Tuesdays!
At the pulmonology appointment James was weighed and measured. They also checked his End Tidal CO2 numbers and the Doctor listened to his lungs. Our pulmonologist mentioned that he could try lowering his PEEP to 8, but the concern is that James has been having a lot of air trapped in his belly. Mom said she thought this was because the trach was too small and the air was going around the trach. Because of this, the pulmonologist wanted James to get another scope done by ENT since his last one was done in September. Again, James is still using a trach from June when he was 5½ months old (2 months adjusted). We discussed the issues with insurance with the doctor but essentially it's out of his hands that insurance won't pay for the new Trach. We may need to go out of pocket. The problem is the principle of the matter. NOT ONE medical professional has heard of a situation where an insurance doesn't pay for a trach. Cigna figures if they draw this out long enough the parents will eventually fork over $1,000. Well next month we may be dropping our overpriced primary Cobra insurance, Cigna, and taking the risk of our secondary insurance, Medicaid, dropping us once they find out they are our primary now. It's a catch 22, you can't sign up for Florida KidCare which is a Medicaid program if you already have Medicaid. You have to wait till you are dropped by Social Security to sign up. And hopefully you can sign up for the new plan in time so there is not a lapse in coverage. Please pray for us, because if we go one month with a lapse coverage it will be catastrophic.
During our appointment we also discussed the passy muir valve. With the cuff deflated, the valve forces James to exhale through his nose and mouth instead of through the ventilator. The air flow is redirected. This allows him to taste, speak, and swallow. See the YouTube video below for a simple yet detailed explanation. The speech therapist told our pulmonologist that she would like James to be at a lower PEEP to try this valve. So we are working on it! Typically you start out for like 15 minutes a day. There are a ton of benefits to it, but sometimes they can get scared because the airflow is being redirected and they aren't sure how to exhale through their mouth and nose.
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| Before valve |
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| After valve |
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