Day 220 - Wrong Sensitivity Settings on the Ventilator!

Saturday, August 7th, 2021

Mom got to sleep from 2:30am to 5am. James woke up right on schedule at 1am and 5am. Hopefully he doesn't do his thing where he only goes in 20 minutes spurts from 5am until 9am.

Doctors switch on the weekend. To be honest, this doctor was pretty rude to Mom today. He told Mom that she needs to stop fighting him (which he means stop asking questions, there is a language barrier) and just agree to whatever he is saying. He said there is no reason she should be looking stuff up when she could just ask them to explain something (but yet, don't ask questions?!). Mom was literally like 🤯. Sorry, but we will always want to understand what medications and procedures our baby is going to get. We will ask questions and we will research on our own, always. 

The LTV

The doctor had him do 10 hours during the day and plans to do 10 hours at night. They also realized that he had the wrong settings the whole time! Which is actually a good thing. The sensitivity was changed to "1" which on the LTV allows the machine to give him more supported breaths. He was breathing 50 BPM but it was only set for a rate of 25. So every other breath he was doing on his own. With the sensitivity change, he started automatically receiving supported breaths every time. Both the Doctor and the RT didn't seem that familiar with the LTV and thought that "9" was the highest sensitivity setting, but really it's the lowest. It's the opposite of how the servo works. So basically we "fixed" the ventilator. This would explain why last week James was getting so tired after his trials. With the sensitivity setting now at a "1", this allows James to tolerate the LTV for longer periods of time. Yay!

We are beginning to get some buzz on Facebook around the James Weston Lullaby singalong!  This will be one of the most adorable passion projects ever!! It's so exciting to see the emails come in!

Dad came to relieve mom around 2:30pm. Thank goodness because she is about done with today! We did some tummy time for a little bit. Around 4pm, we did trach ties and wipe down, then started his feed and he has been calm since. He slept for about 3 hours. Started his continuous feed at 7:25p to give him a little break between feeds to avoid any vomiting. 

They just switched back to the Servo at 8:20p after a 10 hour stint.  They will begin the LTV again at 10:20p after a 2 hour break and keep James on it until he doesn’t tolerate it. 🤞 Hopefully this could be our longest stretch yet. 

James had a full poop at 11pm to close out the day with a bang. 

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. ❤️