Between ICU and the Edge: Maya’s Unsteady Monday 24/11/2025

dellanienash9
Nov 26
2 min read

Today has been another heavy day in Maya’s journey.

Although her neurological status hasn’t changed — she’s still only responsive to pain and doesn’t respond to voices — her oxygen needs are not “intensive” enough for ICU. She doesn’t need Optiflow, but she still depends on oxygen via nasal cannula or mask. She continues to have apnoea spells, desaturating to 81%, usually triggered by secretions or simply by being repositioned to relieve pressure off her bony areas: sacrum, shoulders, elbows, ankles.

By late afternoon, Maya was handed over from ICU to Lion Ward. Truthfully, she’s sitting in a gap that shouldn’t exist — too unstable for the ward, not “intensive” enough for ICU. She would benefit from HDU care, but because she’s an oncology patient with complex and specialist needs, I was told she is better off at Lion Ward with one nurse and one HCA or student nurse assigned to her.

Post-ICU instability is always high, and the last 24 hours proved that again. Her temperature doesn’t register on the nurse’s devices because her body gets so cold. She’s breath-holding again — irregularly, but still enough to terrify me. Thick secretions, sometimes tinged pink. Blood gases being taken regularly.

Then came today’s episode.

At around 10:40pm, just when it seemed like things had settled, her heart rate suddenly shot up to 142 (her normal is 90–100). Maya started crying out, clearly not comfortable, secretions blocking her airways, desaturating to as low as 88%. The nurse, HCA and I started nebulising her, and the nurse did suctions to collect the secretions.

While cleaning her, changing her pad, and nebulising her, we also had to increase her oxygen support up to 15L/m. After repositioning her with a slide sheet, she finally settled. Her heart rate returned to normal, and the whingeing stopped.

But that couple of hours felt like a lifetime — the thought of ICU again sits like a stone in my chest.

She eventually slept from around 1:00AM.

I couldn’t sleep straight away as I feel always on the edge with Maya’s breathing.

Maya has been moved out of ICU late this afternoon, but she’s still far too unstable for the ward — hovering in a level of fragility that keeps us awake through every breath.

Her body is fighting battles no child should ever endure.

Just when we thought things had settled…

How much more ugly cry could we do?

It hurts so much 💔

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