Day 106 - First Hands-On Trach Tie Change

Thursday, April 15th, 2021

Stop-ins and events for today

Doctor Bedside Update - Made some additional changes to the ventilator settings. James decided that he was going to have a massive BPD spell while the Doctor was in the room. It lasted a while. Essentially at the end he had a very loud diaper. So that BPD episode was because he was having a bowel movement. This is why we may need to look into possibly changing his feedings if he isn't tolerating.

Social Worker - Stopped by to see how Mom was handling everything... so it was a long chat.

NICU Doctors/Parent Liaison - Stopped by to let us know that if we want additional training or to use the trach doll again that we have a contact here in the NICU that would be glad to help.

Speech Therapist - Stopped by to say that she heard James was doing well with his pacifier. She suggested that mom practice with James daily, by putting the pacifier in milk and let James get used to the sensation. This is the beginning stages of feeding orally.

RT Camp Trainer - Stopped by to see how the trach change went yesterday and to see how we felt after our training. We let her know that Dad is looking into buying a baby doll to drill in a hole in it and practice the trach change. We also need to snag a bovina flex v 3.0 trach. Anyone have an old baby doll with a neck?

3pm Trach Tie Change - Mom assisted the RT is doing the Trach Tie change. With a rolled up towel behind his shoulders, the RT held the trach in and Mom removed the ties, cleaned the stoma, put on a new split gauze, added new trach ties, and cleaned his neck. The RT sat him up so Mom could tightened the trach ties so only 1 finger could fit underneath.

Mom held James for 2 hours and then we tried switching to Dad so Mom could pump again, but James didn't appreciate the switch out. He had BPD episodes until we put him back in his bed. Dad then read him some Dr. Suess which he loved.

12am-1am - Worst BPD episode to date. It lasted a whole hour. He wasn't desated or bradying (as much) as he was having a full on attack. He was screaming over his cuff. Mom really wanted the staff to call a Doctor but there wasn't enough desats or bradys, just James acting like he couldn't breathe. Looked like the wind was knock out of him and he was fighting the ventilator. The vent was trying to give him breaths and he was not letting that happen because he was spasming. It was awful. Finally the nurse calmed him down by shaking him. Yeah, not mom's favorite but everyone in the room insisted this was okay to do. 🤷‍♀️

3am - Nurse woke up Mom to see if she wanted to change the split gauze around the trach. We asked the Doctor to add notes about the parents wanting to be hands-on, since some of the nurses were not clear on the policies. But seriously? 😑

5:30am - Feed alarm, technical error. Mom got the nurse. These continuous bag feedings are continuously beeping with error messages...

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