Day 245 - Taking Things Slow

Wednesday, September 1st, 2021

Today we tried James back on the LTV ventilator and increased his i-time to ".4" from ".3" around 12:30pm. More inspiratory time increases mean airway pressure, and favours better oxygenation, at the cost of CO2 clearance. Essentially, they increased the time for his inhalation breaths. 

Unfortunately James started retracting stronger than his baseline retractions but when he took a nap he didn't have any retractions. Then James woke up again and the retractions continued. At that point they decided to put him back on the Servo. 😥

The key is slowly adding one thing back at a time. If we just change everything back all at once and he doesn't tolerate something we won't know if it is a GI problem, respiratory issue, or withdrawal. If we add everything back and he tolerates, then we know it was solely an issue with the Reglan. Mom thinks that is the case, but the doctors want to make sure we rule everything out.

GI possible problems:

• He may not be tolerating the formula (Similac Advance). The breastmilk used to be fortified with formula. Currently he is just on breastmilk.
• He may not be tolerating a rate faster than 27/ml an hour.

Respiratory possible issues:

• He may not be tolerating a peep of 10, which is why he is currently on a peep of 12.
• He may not be tolerating the LTV, which is why we are redoing LTV trials slowly.
• The LTV circuit causing rain out, due to the heavy condensation from the heater. 

Withdrawal:

• He may not be tolerating the clonidine wean. Recently we increased his clonidine so that withdrawal could not be an issue.

James has been holding up his toys, his pacifier, his hospital gown, really anything he can get a hold of! He grabs things when you hold them in front of him. He feels our faces (when we take off our masks), and sometimes he pulls our masks off. 😂

James is really making great progress with his development. He is definitely starting to drool! This could be the beginning of him teething!

James would like to raise a toast!

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! 😭 

Still waiting to hear from some of you! 😉 You know who you are! Our lovely RNs and RTs. 🥰 Hey this is going to go viral, just saying...