Maya’s Brain Needs Quiet

dellanienash9
Nov 29
3 min read

Saturday 29th November 2025

Maya’s Update: From ICU to the Ward — and the Road Ahead

Monday 24th November — Discharged From ICU

On Monday afternoon, Maya was discharged from ICU and brought back to the ward.

It was a huge step, and we were grateful… but also VERY overwhelmed, because this transition wasn’t smooth or easy.

Maya continued having scary oxygen desaturations, the kind that plunge your heart into your stomach.

She has extremely fragile lungs right now, and even a small shift in her secretions — or a tiny change in position — sends her oxygen levels dropping frighteningly fast (to as low as 70s %). It has felt like holding our breath every moment, waiting for hers to return.

But as we’ve learned more about the neurological storm that is ICANS, we’re beginning to understand something incredibly important:

*ICANS means Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS)

**Maya’s brain needs quiet.**

It needs deep rest.

It needs time to rewire, reconnect and heal.

The inflammation has shaken everything inside her — especially her neurological pathways.

This isn’t a “wake up and bounce back” type of recovery.

This is slow.

Delicate.

Layered.

And full of tiny victories that mean the world.

🧠 ICANS Recovery — The Stages (With Rough Timelines)

Every child heals differently, but this is what the doctors have explained to us. These phases aren’t rigid — they blend and overlap — but they help us understand where Maya is on her journey.

🌙 Stage 1 — Deep Brain Rest (0–2 weeks)

Eyes closed most of the time
Very low responsiveness
Body focusing fully on stabilising and reducing inflammation

This was her ICU period.

🌤 Stage 2 — Lightening of Sedation (1–3 weeks)

More eye-opening
Random or non-purposeful movements
Increased sensitivity to noise and touch
Agitation at times

This is where Maya is right now.

She’s opening her eyes more frequently, but she’s still not purposeful.

The doctors reassure us this is normal — the brain is rebooting, not ready for commands yet.

🌱 Stage 3 — Early Neurological Return (2–6 weeks)

Tracking or reacting to voices
Small purposeful actions
Recognising familiar faces
Beginning to follow simple instructions

We’re praying for this stage to come gently and steadily.

🌈 Stage 4 — Functional Recovery (1–3 months)

More coordinated movement
Better stamina
Improved breathing patterns
Starting the slow process of rehabilitation

🌻 Stage 5 — Longer-Term Healing (3–12 months+)

Rebuilding memory
Regaining language and cognitive function
Continued motor recovery
Emotional and behavioural stabilisation

This is the part no one can predict — but children often surprise everyone with their resilience.

🏥 How Long Will Maya Be in Hospital?

We have been told, realistically, that Maya may be here another 2–6 months, depending on how quickly she regains her baseline after this neurological storm.

It sounds overwhelming, I know.

But for us, it’s simple:

Every day she is alive is a day worth fighting for.

Every tiny improvement is a miracle.

🩷 Thank You — From the Bottom of Our Hearts 💕

To everyone still standing with us…

Thank you.

Thank you for loving Maya.

Thank you for loving us.

Thank you for not giving up, even when the updates have gone quiet because we were simply trying to survive the day.

Your messages, your donations, your prayers, your shares — they’ve held us up when we could barely hold ourselves.

We are on a long road, but it is a road.