Day 586 - Pulmonology Appointment 🫁

Monday, August 8th, 2022

We were expecting to go into this pulmonology appointment with James getting trials off the vent. In our last appointment a month ago with the doctor he said that all of James' vent settings were low enough to start trials. However this appointment we didn't get to see our doctor, since he was scheduled for rounds at the hospital. We saw the nurse practitioner instead. She was under the impression that James still needed to lower his ventilator settings before having trials off the vent. We were crushed as we had been waiting for this for the last month.

These are the things we discussed:

1. Lowered Pressure Support from 18 to 15 and Respiratory Rate from 25 to 20.
2. We asked for another prescription to an antibiotic because we believe his trach infection never cleared with the last round. We were prescribed Cipro this time. His secretions were still thick and yellow.
3. We did an end tidal C02 test which looked great.
4. We talked about starting his monthly synagis shots for RSV next month.

The NP said she would call Mom later in the day to let her know about the Cipro and what she discussed with the doctor. When she did call she let us know that the Cipro may be hard to get approved because it is not normally approved for children under 12. It may be back and forth with paperwork between insurance and the pharmacy. Yay! She also spoke with the doctor and claimed that he agreed in needing to lower his settings (like getting his PEEP down to 6) before doing a trial. Unfortunately this is just very frustrating since it just doesn't make any sense that he would have completely changed his mind about James' progress. Without speaking to the doctor directly we are thinking that this isn't really his protocol. The NP was nice but our expectations weren't met and after 586 days when we are told we have a plan and then it gets changed it's really disappointing. Next time we would really like to meet the doctor.

That evening, the mess of getting Cipro approved was insane. Mom called the CVS Pharmacy but a told we have primary insurance besides Medicaid that needs to be used. Nope! That is incorrect. Mom called Medicaid to get that fixed, but here was nothing to fix because they know we don't have a primary. Then Mom had to call the CVS Pharmacy back and received a new issue for not getting it approved by insurance, due to dosage. What's crazy is that James just had Cipro back in April for 250mg. This prescription was only 100mg and it still was not getting approved. The doctor's office sent Mom a form to fill out for a request for an appeal. Then Mom remembered that she could reach out to our new medicaid case manager who had recently helped us with getting an order processed.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com