ICU Waves: The Scariest Hours and the Smallest Wins
- dellanienash9
- Nov 23
- 2 min read
ICU Update – Sunday Evening 23/11/2025
Last night was another long, heavy night for our girl. After a stable Saturday, Maya suddenly slipped back into breath-holding and desaturations, dropping to 84% at times. She needed suction after suction; her chest sounded thick with secretions, and the team increased her Optiflow to 70L/min just to support her.
But by 6pm tonight, she has fought her way down to 30L/min, now on air (21%), which feels like a small but hard-won victory.
Maya needed extra oxygen when her day nurse and I gave her a bed bath, and again when I did her passive exercises. She also had an ECG and echocardiogram because her BNP rose sharply from 1200+ to 2500+. The Research Oncology Team will be meeting with Cardiology, Neurology, and ICU tomorrow to map out a clearer plan. She may also need another platelet transfusion tonight.
One bright part of the day was a visit from Enzo, Jerome, and Sophie. Their gentle touches, massages, soft words, and little bits of stimulation did her heart—and mine—so much good. Watching them love her so tenderly is something I’ll hold onto tonight.
ICANS feels like it comes in waves, and the unknown is terrifying. Yesterday, she was stable enough that Lion Ward was mentioned. By 8pm, it all changed again. This is the part no medical parent can prepare for—the whiplash of hope and fear.
Terry has been with me since Friday afternoon, and he only went home when the children left today. We’re both praying that tonight stays calm, no more dips, just tiny steps forward. That’s all we want—progress, even if it’s slow.
If your biggest worry right now is where to place a Christmas decoration, please know how lucky you are. Some of us are just praying our child keeps breathing through the night.
It’s hard to stay positive all the time, but living in the dark doesn’t help either. We feel your love—truly—and we carry it with us into every hour. Tomorrow is another day, another chance.
“Bids for Maya” Auction offers lots of fabulous prizes generously donated towards Maya’s Journey. Please ask if your friends or family would like to bid!
If you believe Maya is going to fight her way through this nightmare, please share her story. Let the world know how mighty she really is.
Thank you, all of you, for loving our Maya the way you do.
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