Day 229 - CPR Training, Withdrawal, & PEEP Down to 11!

Monday, August 16th, 2021

We had such a sweet nurse last night she came in any time his heart rate was up and sang him songs. Mom will never complain about nurses lovin' on her baby. James had a bowel movement around 5am. Of course you know when it's shift change when new nurse takes over, alarms are going off but no one is coming in. It's always a good sign that it's going to be a rough day.

Mom and Dad watched the 24 required videos on the TV regarding G-tubes and tracheostomies. We also completed CPR training. We learned what to do in an emergency situation, if his chest was rising but he was unconscious. Doing CPR on a baby with a trach is a lot different than a baby without a trach. He's also really important that Mom and Dad feel very comfortable with this since a lot of times first responders are not familiar. Just recently in Mom's Facebook trach group there was a situation where the first responder did not bag the baby correctly and the baby did not make it to the hospital. On another note, there is at least one post every other day regarding a baby who has passed for several different reasons. Obviously this is really hard to read and it doesn't help with anxiety but it is good to have a sense of awareness so as to not get too comfortable. Our CPR training will be continued on Friday.

James is pretty inconsolable going through withdrawal because we have been weaning the methadone and clonidine everyday. For several hours mom tried holding him in different positions and he just wasn't having it. So from about 3pm to 9:30pm he was very fussy. He is fighting sleep and refusing to nap. His current symptoms are a ton of sneezing and yawning, drenching himself in sweat, taking more than 5 minutes to console.

Mom ended up doing trach care and a wipe down bath with the night shift nurse because she felt more comfortable. Sometimes you have to assess who the RN and RTS are and decide if it's worth it. Every nurse that we have have the same exact job, yet some are way more overwhelmed than others. Some have been a nurse for over 10 years yet seem more inexperienced than a very passionate brand new nurse. Nurses are like a box of chocolates. 💝 

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! 😭 Also we are getting discharged on the 24th so please try and get your submissions in before then!