Day 142 - Continuing to Rapidly Desat! 😱

Friday, May 21st, 2021

New nurse today who had never had James before because she had a primary previously who just went home. James welcomed her in with an episode in the morning and several more throughout the day.

James had speech therapy and physical therapy early this morning. They tag teamed at the same time. 

ENT also stopped by to check on his trach site, which looks good. She helped us sort through and organize the five trachs we have in the room; putting most of them in a drawer. Now we have the correct emergency trach hanging up! 

Mom was holding James for about 2 hours and around 2:00pm he ended up having a pretty bad BPD episode. Mom put him back in the bed James turned purple blue and desated into the 40s. He had several episodes throughout the day but this was the worst one (at this point).

James sat up in his boppy and was very alert after Mom handled trach tie change with the RT. He would rather sit up than lie down.

Around 6:30pm right before shift change James had a very bad BPD episode where he desated into the 20s. This was not due to a bowel movement or a dirty diaper. Mom simply was adjusting his head on a gel pillow, since he had already been desating into the 80s. She thought he just needed to be readjusted. However he dropped very quickly into the 70s, 60s, 50s, 40s (Mom then asked with all the people in the room if someone could increase the PEEP), he continued into the 30s, 20s, and then finally he started coming back up. Very very scary for this to be happening so often! Thank goodness that our night RT just happened to be there early and saw James going down. Shift change is always crazy busy and James likes to welcome everyone in with an episode. He is a human clock.

Later throughout the night James had several episodes 12:30am, 1:30am, 4:30am, 6:30am, and 7:30am. Some only lasted 15 minutes and others an hour. James has not had a regular bowel movement in 2 days and we know this is leading up to an awful BPD event with a blowout diaper.

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