Day 102 - Calm Day, Crazy Evening

Sunday, April 11th, 2021

No real changes with James today other than his CO2 went down to 65.2 from 74.9. Dad spent the day talking, reading, and holding James. He also watched the trach tie change at 3pm.

Evening Update: Since James had such a good calm day with Dad of course it was an eventful evening for Mom...

He gained a 40 grams... 3380grams (7lb 7oz).

He started around 8pm with having two Brady episodes and a desat into the 50s. No one came in. Mom changed his diaper once he calmed down. He then threw up, so Mom changed his onesie and blankets. James is now a big boy and is moving his arms around a lot when he's awake. Unfortunately this popped off the circuit (trach unattached from oxygen tube). You hear a loud hissing sound which means oxygen is not connected. Mom reconnected it immediately. Needless to say she won't be sleeping tonight. Mom swaddled James with his arms tightly inside, but 3 different times he escaped. #BabyMacGyver

After that his g-tube leaked right through his brand new onesie. Mom had the nurses check it out but no one knew what to do. It looked like it was attached correctly and locked into place. So we changed the split gauzes around the site.

Around 11:30pm James was awake and was very fussy, so Mom started to change his diaper. Another brady and desat into the 60's and it took him while to come back up on his own. Again no one came in. Super frustrating.

3:30am: After trach care, James had a major leak around his cuff. You could hear him cry. It sounds like he was moaning in pain every time he took a breath. This was not happening earlier.

4:00am: Major bronchospasm, several bradys, and oxygen desated into the 50's (would not come back up). We bumped his FiO2 up to 52 from 32. The RT team then called in the on-call Doctor to take a look. She assessed that we needed to increase the cuff to 1.7mls of saline. It was previously increased from 1ml to 1.5ml.

4:30am: Eventually he calmed down but we are waiting on doing his blood gas and blood pressure or else those numbers will be extremely elevated.

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