Day 253 - Fast Clonidine Wean & Prepping for Discharge

Thursday, September 9, 2021

James had a good night. His heart rate was in the 70s. When he was younger this would have be considered bradying but as he gets older his heart rate will go down. A lot of time this is how we can tell whether or not he is in a deep sleep or is stirring without even looking at him. You would normally hear a when baby (without a trach) would become fussy and start to wake up but you cannot with a tracheostomy especially on this super loud ventilator.

James was scheduled to get labs done today to check his electrolytes. He ended up getting another dosage of Ativan 30 minutes prior which made the entire process quick and easy. We had 2 nurses, Mom hold James down while the tech from the IV team got James in one poke. The results came.back that his electrolyte level were all normal. So because the sodium chloride was not high he will continue on that supplement. After the blood was done James was out, sleeping like a log. Thanks Ativan!

As we prepped for discharge we received an updated med schedule and received some of our meds from the pharmacy.

Mom talked to the pulmonologist when he stopped by. He realized that James should have received his synagis last week! It should have been on the first of the month. So we are hoping to get this shot tomorrow before we are just charged. That would save us a trip outpatient to the Pulmonologist's office just to get the shot. 

We then had a surprise visit from one of our favorite RNs in the NICU! It has been so heart warming for these lovely ladies and gentlemen to stop by. While we have been in the PICU, we have had 10 NICU staff come by and see James. So sweet!

In the early evening, James woke up and realized that he should have had his clonidine. Except we were weaning him from 3x a day to 2x a day. This was too much, too fast and James was withdrawing. Completely inconsolable for hours. We ended up giving him a PRN Tylenol because of his WAT scoring. Then Mom and Dad did his trach change. His trach changes have been on Thursdays because his emergency change was done Thursday morning the day we called for the ambulance 2 weeks ago. We felt completely comfortable with this trach change and did it pretty fast.

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! 😭