I’m truly having difficulty coming up with the right words today.
Last night at the hospital was rough.
Avery slept for about 3 hours in her bed before waking up due to discomfort.
I (Ma) held her for about 2.5 hours in the chair before switching with Papa. He held her for another 3 hours.
She was incredibly restless and uncomfortable.
We pushed her pain meds several times, while relentlessly trying to keep her hands away from her face.
She has rubbed her face while she sleeps since birth. Any normal day, it’s no problem.
There’s blood on her face, hands, arms, in her mouth, on her DockATot, our clothes… it’s just everywhere.
The Wound Care Team is supposed to come take a look at her face and access it.
Beyond her skin, her tummy is truly pushing it’s limits with her skin.
They’ve started measuring it to see if it’s expanding. Her weight increased again today.
Her O2 and respiration was good overnight, but dropped a little through the day.
All of the fluids are making it more difficult for her to take full breaths (if you’ve ever been pregnant, you’ll understand this is how the Dr explained it today).
They did a scan of her liver today, but we don’t have results yet.
They’re still accessing her for VOD and working to catch it early. Her liver numbers are a “little abnormal” but not too bad… yet.
We hope to know more tomorrow on her liver.
It’s been a day of trial and error with her meds today. Trying to decipher her grunts, grimaces and movements is a challenge.
Hopefully she gets a bit more GOOD rest tonight. She wants to cuddle, tummy to tummy, but just can’t and it’s so sad.
There was, again, some good news:
We haven’t seen any drooling or outward signs of Mucositis today.
- WBC: 0.7
- ANC: 540
If her ANC continues to rise for 5 consecutive days, she will be engrafted. Today is day 3.
- wound relief on face
- more fluid output
- continued rising of numbers
- healthy liver