Day 397 - Helmet Appointment & Leaving Messages for Doctors

Monday, January 31st, 2022

In the morning, we went to James' Helmet Appointment where he was evaluated for a helmet to help with his flat spot, which is called plagiocephaly. They did a 3D scan and determined that he was definitely a candidate for it but we are coming in on the late side. Honestly it's such a shame that we are just getting started with this now. His flat spot started after he got his tracheostomy at 3 months; however, he was not stable in the NICU and was having several BPD episodes every day. At 6 months, James could have received a helmet in the PICU because he was stable and not having BPD episodes. Several babies get their helmet before they even get discharged. Even after discharge the pediatrician never brought up the possibility of getting a helmet. After 8½ months in the hospital it should be a standard suggestion knowing that almost all babies will have a flat spot. This should not fall on the parents to have to research and bring these things up!

So the next step in this process would be to get insurance to approve the helmet, then we would come back in for more scans to get accurate measurements. Of course getting insurance approval is going to be interesting. Supposedly they have 10 days to respond. We shall see! James does get to pick a cool color/pattern from 50 designs. Unfortunately it sounds like he'll have to wear it for 23 hours a day for about 6 months, following up every 2 weeks. Ouch!

In the afternoon, Mom left messages with James' Gastroenterologist, the Respiratory DME medical Supplier, and his ENT Specialist. We won't hear back from them today. Calling doctor's offices is always a fun game of phone tag. In addition, after waiting on hold with Cigna forever we found out that one of the pending authorizations had been approved over 3 weeks ago! Yet our supplier won't respond. Everytime we call they are busy, or not in the office, and they won't respond to emails. They are lucky they are in Melbourne or we would be in their face.

Recently had a friend suggest that they would have just told insurance what they needed, and would've gotten really ugly, leaving them no choice but to approve things. Please, please do not ever suggest that we are not fighting enough for James through this insurance/supplier nightmare. Literally the worst thing you could ever say to us.

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...