My Nemesis Date.
Do you have a date that you hate over any other ? One that feels you with fear and makes you relive a day you'd wish never happened . A day that gives you pain still now. I do.
Wednesday 23rd of May 2002
I knew before I got Eloise out of her cot that morning that she'd probably be a little unwell. The Evening before after nursery she'd vomited her bedtime milk but managed water and she was struggling with constipation something new for her. She seemed pale and quiet but otherwise ok , we went out for a bit to the local shops. She lay in her pushchair and had a nap. My dad was coming to babysit so I could meet my mum in town , she was working in the Bristol Debenhams for the day as it was Mega Day . After Eloise's nap I picked her up and thought her lips were a little blue and she was using her tummy muscles to breath. My immediate thoughts were chest infection. I phoned the out of hours GP , he said take Eloise to A/E and he'd phone ahead to let them know she was coming. Off I went leaving dad with Leah, thinking worse case scenario admitted for intravenous antibiotics on the medical ward for a day of two.
Eloise was triaged on arrival normal heart rate and oxygen saturations, seen by a Dr and sent for a chest x-Ray. Off we went to the x-Ray department totally unaware of what they'd find. After the X-Ray was taken we returned to cubicle 1 in A/E , after a few minutes I could hear Drs talking and I heard the words cardiomyopathy, being a nurse and having spent 4.5 years working on a paediatric cardiology / surgical ward I knew what this meant. The A/E Consultant came to see me and said a Cardiology consultant was coming to see Eloise as she had a problem with her heart. I was already thinking transplant at this point or death. I just knew this was a crap diagnosis with poor outcome.
She was echoed by the cardiology consultant I remember him explaining how severe her heart failure was and how critically ill she was but in a medical way that as a parent went way over my head. Too technical, too clinical and no compassion, I almost thought he sounded excited. I started to faint then I was in such shock. I had to get hold of S who was working away( London I think ) and my parents. Things moved briskly then as bloods were needed and a cannula but Eloise was so shut down , it wasn't happening. They couldn't even get a intra Ossis needle into her shin bone ( she has little scars). In the end it was decided she needed to be transferred to PICU for cannulation etc. As she was at risk of cardiac arrest . We carefully moved her to PICU . I had to leave her while they tried to stabilise her and get lines in and drugs running etc. Then Dr M a cardiology consultant ( he's still Eloise's consultant now ) came to see me and S he had to explain how sick she was and her chances of survival. Very hard to do anyway but even harder when you've worked together as colleagues. Her chances weren't good, the odds were against her.the next 24 house critical to her future survival, she had a clot in her heart that could break off and cause brain damage. He also said sedating her and getting her on a ventilator would be a critical time for her and she could die at that point. Advising we saw her before that happened. He carried on discussing her care with us then went back on to the unit to oversee her care. Eventually around 10pm we were allowed to see her, she was now on a ventilator, luckily that had gone smoothly as we'd never said our goodbyes. She was on many infusions, catheterised and wired up to lots of monitoring. The thing I hated the most was the cooling mat. My warm baby felt like a cold dead slab of meat.
I couldn't go home,I could not bear seeing her empty room and cot. I was drained emotionally and physically but I couldn't leave her. I spent a few hours resting in the quiet room, hoping my baby would survive the night.
(This Polaroid was actually taken in Newcastle I just have 3 of them , I didn't want pictures of Eloise like this incase they were the last ones I had of her )
This dying baby had been in nursery the day before, how the hell could this nightmare be happening ? It felt like an out of body experience at times, like I was viewing it happening to some one else, like watching an episode of Casualty I suppose. At this point we didn't know the origin of Eloise's cardiomyopathy, whether it was from a genetic fault. Head was a complete mess, stomach sick to the pit and heart aching with pain for my baby. My little girl who had looked so full of life at the weekend.
Nice things have happened on this day since, but it's still a painful anniversary, a time for reflection , a time of looking how far Eloise has come and a celebration of all the good hospital care that's kept her alive over the last 12 years. Thank goodness for the NHS, medical and surgical advances and donor families. This winning combination had kept my girl alive and with me today. But this day really belongs as a testament to the excellent staff of Bristol Children's A/E and PICU without them on the 23/05/2002 things could have been so much worse. I could have lost Eloise .
So that's my day 23/05/2002 and here we are 12 years later. My baby is still here asleep in her bed in the bedroom next to mine ,still alive thanks to dedicated staff in Bristol Children's Hospital who kept her stable pre transplant. They also knew when she needed more then their levels of expertise and passed her care onto Newcastle at just the right time. Today in fact I fly to Newcastle with my friend K for the weekend, so that will be lovely. Xxx
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