Day 257 - Clonidine Wean & No Nurses

Monday, September 13th, 2021

You may be asking why are swe still keeping track of the Days. At first it was to see how many days we were in the hospital, but now it's a countdown to when James will be decannulated. 

Sunday night, Mom and Dad slept downstairs on a queen air mattress that didn't have a hole but sure was uncomfortable. James had a pretty rough night, waking up constantly throughout the night. Mom and Dad took turns getting up. Normally he is pretty good about sleeping from about 9:30pm/10pm until 5am-7am. At least this is what he did in the hospital most nights. But for some reason he did not. There are so many variables we don't even know where to start.

His clonidine was weaned today. It went from 3 doses yesterday to only 2 today. We think this is a pretty big wean. Tomorrow is our first pediatrician appointment.

No nursing today or tonight. The Night Shift nurse ended up having an emergency and told the agency she would not be able to make it. She said she will be here tomorrow though. This is the same nurse who slept through our meet and greet. We shall see!

James tried out his jumper that Mom was given from her Trach Mom FB friend. James is a little too short still. But he almost reaches the bottom! It was a great change of scenery and good way for him to sit up more.

He was fine most of the day but around 11pm he had rainout from his circuit which sent him into a BPD episode (which is what we know now). At the time, Mom know idea why James was so inconsolable for the rest of the night. Mom had suctioned him 3x in a row each time getting out a ton of water. The problem was we didn't run his circuit thought the rails. We figured that the whole day he does fine with the circuit not being to the rails while he's laying in the crib. We also had turned up the temperature in the house, and had put a circuit cover over the inhalation tubing. None of those things helped. It was a very bad night!

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! 😭