Day 103 - Speech Therapy & New Primary Doctor

Monday, April 12th, 2021

Morning Update: so the blood gas that was done at 5am after his bronchospasm came back at 80! So another one was done this morning at 8am came back at 59.7, which is much better!

Here is a video of him at 4am after this Bronchospasm. 

This morning a new primary doctor did an assessment on James. She also went over all of his notes with the previous doctor and got an update on last night. 

James had a speech therapist stop by and had his first assessment. He did really well sitting up taking his pacifier. She put fresh breast milk on the tip and he went to town. Each time she gave him the pacifier with more milk on it he was more open to receiving it. He would open his mouth a little versus piercing his lips. He is learning! She said he sucked for about 19 times at the most before taking a break. He is still learning how to hold it in himself. We are going to make this a daily practice so we can get comfortable with sucking swallowing and breathing. The goal is to eventually get him to bottle feed.

Changes:

We're increasing his continuous night feeds from 22ml/hour to 24ml/hour. The goal to get to 28mls but we don't want him to spit up.

We are increasing his cuff size from 1.7ml-2ml.

He lost 10 grams and is now 3370g. 

10:30pm Update: Another Bronchospasm, desat, and several bradys. 😢

1:30am-3:15am - Another Bronchospasm, desat, and brady that Mom handled by herself again. Mom suctioned him twice got out a lot of mucus, sat him up and gave him pats to change his state. Mind you she did all of this while in the middle of pumping, being hooked up to the hospital pump wall unit with wires that barely reached the crib. Around 2:45am, we did trach care and Mom assisted the RT with changing the gauze around his stoma.

3:30am: Again brady and desat. Mom went in the hall and let everyone know he needed help. Our nurse came in. Changed his massive diaper and that was all he needed. He caused his own spasm by being upset, so now it's becoming a behavioral thing. ☹️

It's frustrating to have no one come in while your baby is desating, bradying, and having loud alarms go off flashing. Yes, James has a new neighbor that looked like they were needing emergency surgery however there are over 10 nurses standing outside his room doing nothing and no one is even seeing him desat and brady...? It's not an understaffing issue, most are just observing what is happening nextdoor with their hands in their pockets. Some have actually come in the room just to grab supplies and walked right out. How horrible would it be to lose a 3.5 month old baby because everyone's attention is on another.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com