Day 109 - Swinging into Today

Sunday, April 18, 2021

3am:  Poor James was having several BPD spells after Dad took over for the night. The nurse was very helpful with helping Dad feel comfortable with the uncomfortable situations. James would calm down for a little bit and would then have a spell. And then calm down ... you get the point.  😓  The Lasix is helping. James dropped 180g, which is good to reduce some of the swelling. His blood gas also showed a decrease in CO2. 


What’s a spell? ... Sometimes his arms and hands would tremor and he would turn red.  Other times he would hold his breath and turn purple. Other times he opens his eyes wide and moves like crazy as if he’s choking.  😔 
What helps? ... We are still navigating through this and figuring it out.  Last night, farts 💨 seemed to help a bit.  He was passing a lot of gas and it seemed to relieve him a bit.  Diaper change seemed to help for a moment. Sitting him up with a FIRM pat on the back seemed to help for a bit. Humming and holding dads finger helped for a bit. Blowing on his face helped for a moment. After a few hours of back and forth, and changing his gauze pads and cleaning the trach area (we bypassed the bath due to him being uncomfortable) we tried putting him in his swing. He desated for a little bit, but once he was comfortable, we put on some Baby Mozart and Baby James passed out rocking away until morning (so did Dad!).  


Morning:  Around 7:30a, James was doing well, still comfortable after shift change. He’s back in his bed now, comfy, and recovering from a fairly rough start to the night. 
Afternoon:  James been able to rest most of the day. He had moments of contracting his lungs, which the doctors are still trying figure out how much of it is BPD vs Withdrawal from the sedation/paralysis meds.  Dad was able to hold James for approximately 2 hours with no challenges. He had a full diaper when they finished...which is great! 

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