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, s

I left ICU on Thursday night, close to 11pm, after a long, reassuring chat with Maya’s night nurse. I tried to find comfort in knowing she would be watching over my baby girl — and she really did. Friday morning was the first time in a very long time that I slept without interruption… even if it was only about four hours. I spent the rest of the morning doing admin on my phone — cancelling and postponing all of Maya’s outpatient appointments: SALT, physiotherapy, her annual E

Maya has been having repeated breath-holding episodes tonight — sometimes up to 20 seconds — with her oxygen dropping to 84%. I alerted the nurse straight away and the CSP came to assess her. They’ve done another chest X-ray (I’ve honestly lost count now… the 5th? Or ?6th since she was admitted on 28 October). We don’t know what’s causing this: – Sleep apnoea? – Melatonin? – Oral morphine? – ICANS? Yes, ICANS can potentially affect breathing in severe cases. ICANS is a neurot