Day 649 - Pulmonologist Appt 🫁 & Waiting for Phone Calls 🤳🏻

Monday, October 10th, 2022

James had an early morning pulmonology appointment. It was scheduled for his monthly synagis shots but we were more concerned with speaking to the doctor to talk about next steps with sprinting off the vent. Unfortunately the doctor was not available and we were meeting with the nurse practitioner. They seemed super overwhelmed and overbooked with patients. The front office receptionist suggested we switch to the other pulmonologist in the office if we wanted to see a doctor. No, how about we stick to the same doctor who has seen James since the NICU since we are so close to the finish line. 

Here are the things we discussed:

1. What is the next step in James printing off the vent? We are currently at 30 minutes twice a day. The nurse practitioner said she would speak with the doctor and call Mom in the afternoon.
2. We asked about putting James on a monthly proactive antibiotic nebulizer treatment called "Tobi". The NP was aware that we had discussed this in our last appointment and still needed to look at his cultures to determine if this antibiotic would actually help depending on the strains of bacteria. Again, she said she would call Mom if we were going to move forward with this.
3. We asked about putting in an order for a double swivel. Mom purchased (shipping costs) some of these from another Trach Facebook mom but we could tell that we would need to replace these when we did a circuit change every two weeks. Every time we disconnected James from the vent the plastic piece would chip/dent a little. Mom provided her reference numbers and a photo so she could submit the order to our DME.
4. We also asked about the results from the culture that James did weeks ago. Since BayCare entered in James' information wrong Mom could not look up the results in the portal. We were hoping we could get the results from the pulmonologist office but unfortunately the NP had not looked at the results yet. She said she would call Mom with those results as well.

🤳🏻 So overall we would be waiting for a call from the nurse practitioner with finding out if James is weaning any vent settings, next steps on sprinting, prescription for tobymacin, and results from the sputum culture. 📞 She never called. 

Mom finally heard back from the orthopedic office after a week of putting in a request online for an appointment. They simply said that they don't see patients for sacral dimples and that we would need to call neurology. Mom called the neurologist office that they recommended but they said they did not take our insurance. So then Mom went to the Medicaid website and looked up pediatric neurologists that were associated with our hospital, which was only one guy. When we called they let us know that they could not see us because we needed a referral because of our insurance. So after going in circles Mom contacted the pediatrician's office to get a referral. The receptionist wanted to know why we wanted a referral since she has a medical background 🙄 being an administrative assistant she was able to make the decision that we needed to speak with the pediatrician for an evaluation. We would be waiting to hear from the pediatrician who was supposedly going to be giving us a phone call. 

So maybe we will get some phone calls tomorrow!

Waiting for the Doctor

Happy Face

James playing with a charging cable

Upset Face

Focused Face

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