Sunny Meets the Sun!

 

Lately, her days have been boring and morning rounds don't take long at all.
Boring is good. 


Mostly, they've been slowly increasing her feeds while keeping an eye on the G-tube cite healing -  it's looking good & they're hoping that we'll be able to use it within the next few weeks.
     They've also begun to wean one of her "chill pills" since she's been so stable. It was a drug they started her on when she was a teeny, irate bean. It worked to help calm her lil brain & it isn't a narcotic, so hopefully this wean will go better than the morphine wean. 


    The Pulmonary physicians were by again this week, and lowered some more of her pressure support on the ventilator. The pressure support works to keep some air present while she's exhaling, so it helps  her lungs remain open and her oxygenation levels up. While most peoples saturation goal is 100% or close to it, Sunny's goal range is 75-85% because of her heart issues.
Since the flow restrictor was placed, she's been trending on the higher end of that range. Even now as I type this, the number on her screen is blinking yellow because she's out of that range and is hitting 92% while she sleeps. That is one of the more obvious indicators that they look at to see that she's doing too good, and may need less support than what she's currently on. *we love good problems*

SUNNY MET THE SUN!!!
Wednesday afternoon, a posse, composed of Suny's Occupational Therapist & her student, Physical Therapist, a trach-emergency-bag wielding nurse, and a SWAT nurse for cardiac purposes, escorted us to The Healing Garden. Just getting to push my darling girl in her stroller was such a sweet gift.


  It was a lovely 75 degrees with the perfect mix of clouds and rays of sunshine! She looked up at the trees above her for a little, then we sat on a bench for a while and
chitchatted with said posse.
 Sunny had been awoken from her afternoon nap, so she spent most of the time outside trying to put herself back to sleep. She tends to suck her tongue and rock her head back and forth when she's sleepy and wants a nap, so she's sticking her tongue out for most of her "first day outside" pictures. But, she didn't hate it!
We're already trying to get another outing on the books, and we're already excited for that. 


Prayer requests:
- Sunny's g-tube cite to continue healing, and for the transition to using it for feeds & meds will go smoothly.
- Continued general health for the three of us


Thank you for your care and prayers, we appreciate you.

Love,
Chris, Alyssa & Sunny


Her night nurses & the Nurse Practitioner on duty had a photoshoot early this week to get an updated photo for her chart.  This isn't that photo, but they said it of course had her disco ball. 

Lots of fingy chewing!




☀️

Basking 

Her OT didn't let her leave her room without her disco ball


Sunny's been getting serenaded by Papa this week

Sunny loves when I flip the camera around so she can see herself 



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