Day 119 - Dad's first Trach Tie Change

Wednesday, April 28th, 2021

Today we changed Doctors, this is another great Doctor who we really like and have had since we've been back in the NICU. Overall James had a good day today. We had a new nurse because our primary nurse was floated to a different department. However this new nurse is one of the best nurses we've ever had, definitely top three! 

James did not have too many events during the day. Just one at the beginning of the day shift and one towards the end. Our nurse today showed us that we can vent the G-tube with a syringe. Game changer! This gave James instant relief by releasing the gas from his stomach. 

James started off the morning with physical therapy. He had a new PT instructor today, who was able to show Mom some new ways for James to do tummy time across her lap. After PT, Mom held James for 2 hours. Then Mom and Dad gave James a bath. This was his first tub bath since the trach and G-tube surgery. He did really well and fell asleep again! 

After his bath we did the trach tie change. Dad assisted the RT for his first experience with James' trach care. It was a successful tie change. Then Dad held James and James stared up at Dad for a while.

Changes today:

• Increased feeds to 88mls (9:00, 1:00, and 5:00)
• Stopped caffeine
• Starting baseline for WAT - In a few days we will be weaning James off of the methadone. Before we do that we need to figure out what his baseline is before we start scoring him on withdrawal symptoms. So over the next few days we will be taking a look at his baseline symptoms. For example, getting really sweaty is a symptom of BPD and it would not be fair to him to count it as a withdrawal symptom. There is a previous post titled withdrawal that goes into more detail on the WAT scoring used.

On a side note, Mom was successful in getting a BPD Facebook group created. There is a woman who founded and trademarked a group called "Moms of Trach Babies" with over 7200 very active members. She actually has over 30 other sister groups related to this. One specifically for dads, nurses, angel babies, heart issues, decannulated, spanish, terminally ill, single parents, etc. After someone made a post yesterday asking who has BPD, it received an overwhelming instant 85 responses. Mom reached out to the Founder and asked her to create "Mom of Trach Babies - BPD" group. Hopefully we can figure this out together!

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