From Desaturations to Determination

Wednesday 10th December began in the shadow of Tuesday’s general anaesthetic, and the morning reminded us just how fragile recovery can be. Post-GA, Maya suddenly desaturated to 76% when secretions built up around her throat. The anaesthetics had dulled her respirations and swallowing, and for a few terrifying moments everything felt very precarious. She needed 15 litres of oxygen for around 20 minutes, along with a nebuliser to help loosen the mucus. Watching her struggle to clear her airway was frightening in a way that’s hard to put into words — that quiet, breath-holding fear every parent knows too well — but she stabilised, and we got through it together.

Once things settled, the day gently shifted towards rebuilding. Morning physio focused on edge-of-bed exercises, carefully working to strengthen Maya’s neck and torso muscles. Maya hasn’t got any voluntary movements so it’s all passive exercises done for her until she regain the strength and muscle tone. These sessions might look small from the outside, but every lift of her head and every moment of engagement matters enormously on this long road back.

Music therapy followed as Maya rested and recuperated, filling the room with calm and familiarity. Later, her wonderful home education teacher, Sue C, came to visit, along with my mother-in-law Dora. In a moment that felt like pure medicine for the soul, they caught Music Therapist Hannah and me singing along to Maya. I even got to strum Hannah’s guitar while we played Maya’s favourite tunes. For a while, the hospital walls faded and it felt like we were simply a family sharing music and love.

The afternoon brought OT, which meant hoisting Maya off the bed and into her tilted chair. This time she managed it for longer than an hour — a real achievement. She was unsettled at first but eventually calmed, until tiredness understandably took over. These sessions take so much out of her, but they are essential steps forward.

By the end of the day, it was clear how long and complex this rehabilitation journey is becoming. An official letter was drafted to the Occupational Therapy department to clarify clear, safe guidelines for hoisting Maya onto her chair — something that should never be ambiguous when a child’s safety and recovery are at stake.

As Maya’s mum, I will always advocate fiercely for her. She deserves safe, consistent, unfragmented rehabilitation — and I deserve to be supported too, as her parent and constant caregiver, by her side 24/7, fighting for what is right for her care.

Email sent:

“Subject: Concerns About Accountability and Responsibility for Hoisting Maya

Dear Lead Back Care Advisor / Senior OT,

I am writing to raise concerns about being asked by OT to take on some responsibility for hoisting my daughter Maya Nash on and off the bed during her rehabilitation from ICANS, which unfortunately Maya developed as a severe side effects from Car T cell therapy, infused on 4th November 2025.

Within the presence of my family and Maya’s day nurse on 10th December 2025, OT explained that due to her winter sickness, and general staff shortages within the OT department, hoisting will eventually become the responsibility of the bedside nurses at the Lion Ward and myself as Maya’s parent. This discussion also took place on Monday 8th December 2025 between me and OT and in the presence of another OT and student nurse at the time of hoisting Maya back to bed on Monday afternoon. With respect, I do not feel this is an appropriate or safe expectation. Staffing pressures are a hospital management issue, not a problem that I (as Maya’s parent) should resolve, and should not result in clinical responsibilities being transferred to an untrained parent.

Whilst I am always willing to support Maya by steadying her head, feet or lines, I cannot take on the clinical responsibility of hoisting. This is a specialist manual-handling task that carries significant risk and, under NHS and manual-handling regulations, must be carried out by trained and competent staff following a formal risk assessment.

I also need to highlight the practical and safeguarding issue. The only time I am able to briefly leave the hospital to reset—such as going for a swim, walk or getting fresh air—is when family visit. If hoisting becomes dependent on my availability, it would effectively remove the only opportunity I have to look after my own wellbeing. Staff are able to go home to rest; I am here 24/7, and my short breaks should not be questioned or made impossible because hoisting is not appropriately staffed. I understand that Maya is generally more settled when I am present on the ward during hoisting, but if the only time I can take a short break for myself coincides with her transfer, her hoisting should not be compromised.

I am therefore politely requesting:

1. Clarification of who is responsible for hoisting Maya, in line with GOSH’s manual-handling protocols.

2. Assurance that trained staff, not parents, are responsible for hoisting and transfers whilst in the hospital setting.

3. A review of Maya’s manual-handling risk assessment to ensure safe and appropriate practice.

   
   

I am very happy to collaborate in Maya’s rehabilitation; however, the responsibility for hoisting cannot be solely placed on me or depend on my presence, as there are times when I may need to step out briefly—such as when family or friends visit from around 1 pm (train fares from Folkestone/Ashford Kent are cheaper after 11 am). A key part of Maya’s rehabilitation is being safely mobilised out of bed, and I would appreciate clarification, as I understand this to be the responsibility of the Occupational Therapy and Physiotherapy teams? Or moving forward, is hoisting actually to be performed by the bedside nursing staff as part of their daily ward duties as I am lead to believe? I am not criticising OT’s practice; I simply need clarification on who is officially responsible for Maya’s hoisting. Could you please advise?

Thank you for addressing this promptly.

Kind regards,

Dellanie Nash (Maya’s Mum)

Cubicle 9 - Lion Ward”

C’est la vie!

It became painfully clear just how long and complex Maya’s rehabilitation journey will be. Clear, safe guidelines for her care — including hoisting — are not optional, they are essential, and I will continue to advocate relentlessly to ensure her recovery is protected. Standing beside her 24/7, I fight not only for Maya’s right to safe, unfragmented rehabilitation, but for the wellbeing of the parent who must be strong enough to carry her through it.

“A mother’s advocacy is love in its fiercest, loudest, most unbreakable form.”

Thank you all for standing by us. We keep going because of you all…

To those that have asked:

PayPal to dellanie_nash@yahoo.co.uk (as a gift)

Santander

D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey