Day 111 - Looking for Answers

Tuesday, April 20th, 2021

Today James had a rough morning... desating, bradying, gasping for air and sounding like he was drowning. It didn't feel like a BPD episode, it sounded more like James couldn't breathe and was choking. He started retracting again.

Mom interupted Rounds by asking for someone to come in and help. He was sitting up in his boppy and could not be calmed down. 2 nurses, 2 RTs and a Doctor came in. They briefly increased the PEEP to 14 (this is something that they will do if he has a really bad event). James started coming back up. Today we switched Doctors again. This is one we have worked with the most over the past 4 months. 

ENT came in for a consult because James' leak had been so large. This morning up to 62%. The ENT Nurse Practitioner took a video of James being so vocal with his trach and sent it to the ENT Doctors to get their opinion. Shortly after we were informed that they would be upsizing his trach from 3.0 to a 3.5. The doctor also got an ECHO to check for pulmonary hypertension. Unfortunately James had an episode during the echo and we will need to redo this.

Today James liked to play a game where he constantly would take a sock off. He is very smart and he won after several times, Mom gave up!

James did very well with the trach change. We think this new up size will allow him to get the air he needs!

Latest Stats:

Weight: 3780 grams (8lb 5oz)

Height: 17.91 inches

Blood Gas (CO2): 69.2 (up from 67.5)

New Vent Settings:

Changed from PRVC mode to SIMV (PRVC) + PS mode -This will give him support with allowing him to take his own breaths.

FiO2: 27-34
PEEP: increased to 12 (14 during spells)
Rate: 30
Tidal Volume: 43

Pressure Support: 20

1am - Finally got him calmed down. Time for bed!

3am-4am Update: Bad BPD episode - may have been caused by being in an uncomfortable position. One leg was bent weird and caught under the blanket. Tried rocking him, wet wash cloth on head, and changing his diaper. After an hour, he calmed down by constantly hitting the bumper in his bed. Oh, and it is was time for his morphine. He needs an automatic vibration or tapping machine. This next blood gas will not be good...

4am - Might as well pump now!

4:30am - He is awake but not upset. His internal clock is backwards.

5am - James gets a heel stick for his blood gas, and so it begins again...

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