Day 205 - Emergency Trach Out & Poor Choice of Words

Friday, July 23rd, 2021

Updates:

• At 12:30pm, James had a massive diaper. All over his bed, filled up 3 diapers, and a onesie. 2nd bowel movement today. Mom talked to the Doctor to see if we can change the lactulose to just once a day so we will skip the evening dosage.
• Mom did his wipe down bath by herself.
• James did 7 hours on the LTV today for both day shift and night shift.
• Tomorrow we are getting a new doctor that we've never had before.
• We've asked the nurse to start doing mylicon gas drops again.

🚨 First emergency trach out situation! We were doing Trach ties and the RT was insistant on holding up the back of his head instead of him laying on a rolled towel. Mom asked several times if he could just lay him down, because that is the way she was trained to do it and is comfortable that way (more importantly it's safer). The RT let Mom know that the swaddle not working, James was getting out of it (this happens everytime we do trach care). Well we heard James make a full baby yell, a sound that Mom never heard before. She checked and the Trach was not in the stoma, which means James wasn't getting oxygen. Mom doesn't know what the RT was actually holding but it wasn't the trach. Immediately Mom grabbed the trach and put it in the stoma without the obturator. It was an instant response. Instead of worrying about gauze Mom said "let's just get the ties on right now, we can do the gauze later..."

Before tightening the ties Mom asked the RN if the cuff pilot balloon was underneath the tie. The RN said "No, you're good." So Mom tighten the ties, undid the swaddle, and laid James back down. Mom checked his cuff pilot balloon to see that it was stuck underneath the ties! WTF. She ended up undoing a tie from the front and taking the cuff out (this typically cuts his neck because the ties are so sharp). 🤦‍♀️

Mom had a pretty unpleasant experience with our night nurse. Nurse says to Mom, "Well if it makes you feel any better I don't get any sleep with my newborn either. You're lucky he can sleep through the night since he gets fed from a bag. You don't have to get up to nurse him." 😱 (That is just a portion of the conversation). Mom let her know that actually it's a little different because if James disconnects his oxygen in the middle of the night, he dies. Mom has pretty much had it with these comments.

First of all, no Mom isn't able to nurse her baby in the middle of the night to calm him down because James is fed through his G-tube. She would love to! Not being able to breastfeed is something that she actually pretty depressed about. 😭 Mom also gets up hourly to respond to vent alarms every time he stretches or yawns. 🚨 Mom suctions him throughout the night to make sure he doesn't get a mucus plug. 🫁 She pauses the feeding and vents his G-tube with a syringe to let air out so he doesn't vomit. 🤮 Yes, Mom is very lucky that her baby has a GTube and has to be fed through a bag. We did it out of convenience. 🙄

It was not an appropriate comment. As a pediatric nurse they will be in this situation a lot; caring for babies with tracheostomies and g-tubes. Are they not trained on empathy? On top of this, Mom has had to hear these PICU nurses go on and on and on about their healthy newborn babies, and those stressed about their current pregnancy not being healthy. Really...? Mom has never had so many nurses talk about themselves non-stop. Dad has also witnessed these first hand and thought it was distasteful.

Looking up at James' room in the front of the hospital.

View from James' room

Yawning

This is the first time James has held something for a substantial amount of time.

Not a big fan of the iPad

He would much rather look at people in the room

3am sleeping with his arms out

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