It's a pretty yucky thing to watch, since she's straining against LOTS of tubes that are sewn into their spots. They assure us she isn't moving because she's in pain, though. They say kiddos with Down syndrome generally metabolize sedatives much differently than kiddos without, and LC is an exceptional example of that! While they usually sedate most kids her size on a four hour schedule, they're needing to sedate LC every HOUR to keep her still. Even then, she's proving her toobie pulling talents run deep and manages to grab and tug at all her countless tubes even when she's supposed to be deeply under.
While LC's acrobatics aren't worrying her nurses they aren't a visual treat and the restraints are hard to see even though we KNOW they're keeping her safe and medicated and well.
We were assigned a room in the Ronald McDonald family rooms and are now drawing straws over who gets to set the sleep number on the twin bed we'll be sharing. I'm not concerned, as Justin will most probably fall asleep within the first 40 seconds and I can crank his 50 back up to my desired 85.
PRAYERS FOR TOMORROW...
Her liver performance continues to be slightly abnormal. Her doctors are waiting to see if reduction in swelling and fluid congestion improve her liver function and reduce its size.
Tonight LC began showing signs of abnormal heart rhythms. These may be caused due to swelling and her heart may be conducting impulses at the steady rhythm but unable to communicate it through layers of swollen tissue. We've been told she may need a temporary pacemaker if the abnormalities continue and decisions about anything more permanent will be made if the difficulties continue when her swelling and inflamation subside.
Tomorrow's biggest challenge is the plan to begin weaning LC off the ventilator. Despite their enthusiasm and energy while sedated, her nurse warned that kids with Down syndrome typically turn into lumps when it comes to breathing on their own..."They move all over when we don't want them to, and when we ask them to be awake they immediately fall asleep..."
In order to test her readiness for the ventilator, they'll need to bring her out of her sedated state enough to experience what's going on around her and to be conscious enough to attempt breathing on her own. We've been told it will be difficult for LC and watching the process will be an unpleasant one for us as well. Please pray for patience for us all and peace for LC Belle as we try to cross the hurdles that will bring her out of ICU...
These are the milestones we'll be working toward:
- Independently breathing without the ventilator
- Setting and maintaining the pace of her heart without the pacemaker
- Being weaned off continuous feeds of various heart medications and maintaining healthy heart function without them
- Feeding independently
- Removal of drainage tubes, central line and various other wires and contraptions
Your prayers have been a physical force that carried us through LC's surgery and the hours afterward. Your encouragement has overpowered the fear and anxiety we were wrapped up in when this day began and allowed us to see hope in the potential pain tomorrow will bring.
You've taken ownership and stock in the heart beating in LC's chest and we can't say enough about how sweet it will be to fall asleep surrounded by the power of your prayers and resting in amazing grace...