Day 232 - Home Vent Training Day

Thursday, August 19, 2021 -Written by Dad

Dad took over so Mom could sleep at home before they do their Room-in tomorrow night. 

James slept from 930pm-1:30am.  He REALLY needed it. He’s been pretty cranky and unsettled for a little while, so for James to sleep and rest is great.  We did a diaper change, suction, changed the drain diaper, did a reposition and BOOM! … He's back asleep after only 30 mins. 😴 

Then, like clockwork, James is up again at 5am with a big poop to start the day. Overall, it’s been pretty good tonight. 

A few days ago we had a Baby Yoga Instructor come in to meet with James and brought the most amazing book called “Breathe Like a Bear”.  It’s all about breath work, humming, and how to teach kids how to connect with their body through the most adorable approach. Dad read James the first chapter titled “Calm” and it is so good!  The section titled “Hot Chocolate” had Dad teach James how to blow softly like it’s really hot, then smell the scent of the cocoa, then go mmm to taste the hot cocoa.  (Small breath in the mouth. Small breath out the nose. Small humm.)  All activating the parasympathetic nervous system in the most amazing fashion.  Dad is obsessed!!

During rounds, the doctor said they will try a 10 PEEP tomorrow. This will be the lowest James has been at since he’s been here.  After he gets on our home vent today, they will stop the methadone tomorrow. And then continue to wean the clonodine. 

Afternoon:  Mom and Dad had Vent training at 1:30pm. They had a crash course on everything they need to know for the home LTV.  Mom is extremely knowledgeable and needs to start a YouTube channel or podcast to help other families.  Dad is waiting for Mom to teach him everything when they go home. 

Assuming everything goes as planned and James gets discharged on Tuesday, his first pediatrician appointment is on Wednesday at 1:30p, the day after we get home. 

Mom took over so Dad went back home to receive a delivery. James got three boxes delivered to the house this evening. Lots of supplies. Mom has turned the living area into a hospital zone. She’s so impressive. 

Evening:  James was screaming bloody murder from 7pm until 9:30pm. Like the worst Mom has ever heard him. The doctors came in and we checked the trach several times. Ended up needing to make the ties tighter. It's really important we make them tight, especially now that he pulls it. This was right after we did trach care.

The RT who did our training today never turned on the oxygen. James was on room air until 8pm. The night shift RT noticed that the oxygen in the wall was off. So we let him go without oxygen because he was stating well. And then once he went to sleep he started drifting to like 89 so she decided to put him back at 1 liter which is 25%. I think that was really good to see that he could handle that, but the forgetful circumstance isn’t ideal. We now know that we won't have to freak out too much about oxygen tanks at home. It'll be interesting to see how he tolerates a 10 PEEP tomorrow.

Part of the reason I think he was upset was that he was clamped. We ended up unclamping him and then Mom used a syringe to vent. Was able to get gas out faster. He had so much gas. So Mom is wondering if the gas drops that were stopped the other day and switched to PRN should be added back in. 

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭