Day 308 - Nap Schedule & Scheduling Treasure Hunt

November 03, 2021

Wednesday, November 3rd, 2021

Today our M,TH,F nurse filled in for our T,W nurse since she requested off.

Mom has been trying to get James scheduled for an Opthalmology appointment. It's taken weeks. We were referred to an office in Palm Harbor which is like an hour away with traffic so we'll need to bring additional oxygen tanks. Even more considering is the battery life on the equipment (ventilator, pulse ox, suction machine, and feeding pump). Finally getting through to the office they said that we couldn't schedule with them (even though we were referred by our pediatrician) because we need to fax them a Newborn Pediatric Eye Consultation Record to proved he passed his ROP test in the NICU. They informed me to get that from his pediatrician. Mom calls the pediatrician office who says they don't have that and that we should call the Hospital ROP (retina of prematurity) NICU nurse. Mom calls her, she states that she does not have this but that Mom would need to request the Medical Records directly from the hospital for April 13th the day he was "released from ROP". Mom puts this request in online, which said it could take up to 10 days. The ROP NICU Nurse calls Mom back, trying to help, to let her know that she is going to have the office of the Doctor from Ft. Lauderdale who did James' ROP test fax the Opthalmologist's office directly today. Well that never happened, but she did receive the medical records back. It was a 125 page document that you could not search (Control F) through. Mom read every page and still did not see a Newborn Pediatric Eye Consultation Record, but did receive a bill for requesting this useless PDF that is completely accessable for free on the BayCare Portal. So she called the Opthalmologist's office again. They were sick of hearing her. Mom asked if they would accept a printed out copy of the Hospital Discharge Notes, there was note from the Doctor that day who wrote that his ROP was normal. They finally just agreed to scheduling if we could bring that with us. So the key is keep calling until they just give in.

James has been doing really well with naps. Typically he wakes up at 7am, then takes a nap at 10:30am sometimes for 2 hours. Then again at 2:30pm for an hour, and then again around 5:30pm/6pm. He starts sleeping through the night around 9pm. Lately he has been waking up at 5am. 😳

Mom does the last milk for the night at 11pm (every 4 hours). And then at 3am, she defrosts breast milk to add to his bag, gives 2 medications, change his pulse ox to his other foot to avoid burns, change his diaper, and suctions James. Most of the time he doesn't wake up except right now he is on a roll for peeing on everything at 3am and Mom needing to change his clothes and the bedding. So this 30 minute 3am of duties turns into 1-2 hours because Mom is trying to get him back to bed. So now it's 5am, James is tossing and turning setting off his ventilator alarms and kicking his feet setting off the pulse ox alarms. This goes on every 30 minutes between 5am and 7am. 7am the nurse is here. Rise and shine and Mom has really only slept from 11:30pm to 3am with a few intermittent periods between 3am and 7am. 😩

Exhausted as usual, Mom still made sure James was doing something active and put him in his bouncer. He did really good with using his core to move himself around. The key is scheduling this activity when he isn't tired. Then afterwards Mom will hold him and he will fall asleep easily.