Clinging to hope

On the morning of Friday, 8th February, Abi had another CT scan – her first scan after the two operations. Taking her for this scan wasn’t a quick process for the care team; just to move her to the scanning room was a major task as all the equipment had to go with her. We left them to it and waited another couple of hours for this to be done and for her to be brought back to ICU.

We’d been told that she had coughed twice, while they were changing her ventilation tubing, something the nurses seemed hopeful about – it was apparently a good thing that she did this. Her pupils had also dilated slightly when they shined the light in them, having previously been fixed. During our waiting, we discussed how these must be small signs that she was doing something, and could only hope it would continue to be that way. After all, she’d only recently had the operation.

Back at her bedside, a doctor (Abi’s anaesthetist) sat down with us. She had a calm presence about her, but I recall her large, clear eyes and the deep sympathy they expressed every time I looked at them. She said the scan showed no difference to the scan she’d had in Gloucester… before the operations.

‘What does that mean?’ I asked. ‘Based on what you know, what should she be doing now?’

‘We’d certainly expect to see something by now,’ she said, quietly. She looked long at us, not needing to say much more. ‘There’s a lot of damage…’

I held my husband’s hand tight, whilst holding Abi’s hand on the bed. It felt warm.

‘Will you scan her again?’ I asked, tears threatening to spring from my eyes again. I thought they would scan her periodically to check for signs as time went on.

‘No. We won’t scan her again, it won’t tell us anymore than we know now. She’s showing no improvement on the CT scan, it’s up to her now.’

I couldn’t help feeling surprised by this. I knew that the doctor was trying her best to tell us that hope for Abi was all but lost. She wasn’t exactly brain dead, but her brain hadn’t recovered from the bleed.

She told us, as there was nothing more they could do for her there, that they were moving her to Bristol Children’s Hospital (BCH), about ten minutes away. I felt wretched and worn out. Another move, another place to get used to.

I was so scared about them moving her. I looked at Abi, she had a ‘line’ in every vein imaginable – both arms, both feet, her groin – each feeding something into her to keep her alive and comfortable. Then there was the ventilator and feeding tube in her mouth. She was a tough cookie, but she didn’t like needles. She even went faint when she had her ears pierced. As I stroked her hand, I sighed, knowing that she would hate all this.

We were told that the intensive care unit at BCH was much more geared up for ongoing critical care of children, and once she was there she’d be reviewed by their team of consultants. But even though we knew there was very little hope, for some reason by moving to a new place we almost felt that hope return. Perhaps this new hospital would be able to help, or would be the place where she would start to respond? Despite everything we’d been told and knew in our minds, we STILL had hope.

After an hour of preparation, Abi was finally ready to go. She was on her bed, cocooned in an inflatable covering to cushion her from any impact, the machines piled around her. I could just about see her face to press a kiss on her forehead with my fingers, and tell her we would be with her. The ambulance crew were there along with the consultant who was to oversee Abi’s care from then on. Little did we know then that two days later, this same consultant would be helping us to say goodbye to her…