Day 756 - Approved Antibiotic 💊, New Ortho Doc 🦴, On the Road Again 🛣️
Wednesday, January 25th, 2023
James had a pretty rough night. He was awake starting at 4am sitting up and crying. Mom ended up having to bring him to her cot, where he eventually fell asleep around 7am. 😩 It was a great start to a very long day.
In the morning, Mom got a text from the Medicaid case manager saying she reached out to pulmonologist's office again since she hadn't heard back. 🤳🏻 She found out that they submitted the prior-auth yesterday and submitted again today as urgent. So at this point our case manager followed up with CMS (Children's Medical Services) which is who his Medicaid is through. Eventually she said an approval was entered and to check with CVS if it was ready for pickup. Mom had 2 missed calls from CVS. 📞 Turns out they did receive the approval however they did not have it in stock. The pharmacist said he would call around to other local stores to see if anyone had it. He found one and said they could have it ready today. Overall our case manager is super helpful and made the process go a lot faster, for sure. Could all of this have been avoided? Absolutely. Moving forward anytime James' needs to get an antibiotic Mom will be pushing the doctor to submit the prior-authorization with the script.
James had early intervention therapy right before his new orthopedic appointment. We practiced something new with his octopus. The goal is to get him drinking water. 💦 We've tried all sorts of sippy cups, baby bottles, and cups with straws. 🍶 He doesn't like any of them. So we decided to just use a small plastic medicine cup. The therapist showed him that the octopus drinks water from the cup. It was empty, but we were just pretend playing. James thought it was hilarious. 😆 Then he copied the same action and held it to his own mouth to pretend drink. It's a start!
After therapy we needed to back up to go see James' new orthopedic doctor. 🦴 This was a recommendation to us from another trach mom. James' previous ortho doctor never even examined him; it was just a waste of time and a copay. However this appointment went great and completely different! We did wait for about an hour to be seen, but that was the only complaint. Everyone was very nice. Our main concern was the shortened long bones. Mom let the doctor know that at James' last endocrine appointment they had measured proportions and the numbers were still off, showing that his arms and legs were shorter than normal in comparison to the rest of his body measurements. Mom also mentioned (besides going over his entire history) the whole exome sequencing tests that came back normal except with the partial recessive gene on chromosome 4 for osteogenesis imperfecta Type II. He said that sometimes these tests come back with too much information and that his long bones could just be shorter due to prematurity. They took some x-rays 🩻 and we found out that his hip sockets are forming nicely! This is huge! The doctor also looked at full body x-rays taken back in April 2021 in the NICU and was curious about bone density on a few he saw. He recommended that we see an Endocrinologist who specializes in bone density at USF and would supply a referral. Mom let him know it wouldn't be a problem to switch because our current endocrinologist wasn't really seeing James for anything at this point. We will be following up in 6 months.
Mom had planned to run errands after the appointment but it was already getting late so we only had time to go to CVS and pick up the antibiotic. Dad was running behind with work stuff. We didn't get on the road to Orlando until very late. We left around 9:30pm after packing up. This would be almost a week of traveling yet again! First to Orlando and then to Atlanta. James' longest road trip to date! 🛣️
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| Sleeping in Mom's bed... |
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| Waiting at CVS |
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| Made it to Orlando |
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