When we left the unit it seemed to have a buzz about it , and Eloise's observation charts etc kept being taken down from where they were stuck on a wall. I remember that much but I didn't think too much of it when we ventured into the City centre. As far as I knew Eloise wasn't listed for a transplant at this point as she had an infection in her femoral line that needed treating. We had a pager with us anyway.
We did our shopping then waited for a bus back to the hospital. I remember seeing a poster for the Fire Brigade on the side of the bus . It was a poster about arson It had a lit wheelie bin on it and a slogan along the lines of " Do you know what your child is doing tonight ?" I've tried to google it to no avail !
When we got back to the hospital we were greeted by a rather frantic transplant team, they'd been trying to page us. They had an offer of a heart for Eloise ! Complete and utter shock , I guess I still hoped Eloise's heart would recover fully in time, you read of these miracles happening. Couldn't it happen to Eloise, couldn't we just hold off ? Just wait and see, time that's all she needed, just time. But she didn't have time, she was starting to go into multi organ failure. In 24 hours she'd need Ecmo so this was her only chance. There was a catch though the donor heart came from a little one with blood group B and Eloise is an A. Could we wait for a match ? No, would the surgeon transplant this heart into his own child ? Yes. He explained that they had run and re-run Eloise's antibody bloods as no one could believe that a 21 month old toddler hadn't developed antibodies to blood group B . Only 28 mismatches had been performed Worldwide at this point in time, 2 by the Freeman , all the children had been babies. We'd by some strange twist yet again been thrown a life line for Eloise by the Freeman. Both S and I signed the consent , we were consenting to something so important I felt it was best we both signed, incase something went wrong. You then couldn't blame the person who gave consent.
I'll be honest now I have no real idea of the time scale and what happened when. I remember being told when the donor heart arrived in the Freeman by the donor coordinator. I hated the fact it was almost described as a spare part, a piece of meat, so that's never been forgotten , the "it's looking good in the box" phrase.
I remember the anaesthetic team coming onto the unit to sedate Eloise ready to be transferred to theatre. Actually I don't just remember I often relive it. Horrendous flashbacks of watching Eloise's vital signs deteriorate on the monitor then all the alarms going off. Staff jumping into action , chest compressions, iv medication . It was like watching it happen to someone else's child or like watching death of the episode on Casualty the TV programme. Like I was floating above it . The donor coordinator used those words " are you alright ?" I'm unsure what response she was expecting but probably not " of course we're not f&@king alright ! " from S. I don't think she ever saw us after that ! The Team stabilised Eloise, I remember thinking not now Eloise, please don't die now, another child has already died today, you need to live, your chance is here waiting. Don't go now, now we have hope again. Eloise was wheeled to the operating theatre we kissed her and said our goodbyes, again not knowing if this was goodbye forever. I think this was between 10-11pm .
We left the hospital and went to our shared parents accommodation . We made the decision not to tell family and friends, we needed to come to terms with it all ourselves. I was exhausted and bizarrely I managed to sleep , S stayed awake, at around 4am I think the phone rang in the room. Eloise had survived the transplant and was now being settled back onto the unit. S decided to go straight over and see her. I couldn't, I wasn't ready emotionally , I slept again ! Preferring the oblivion that afforded me. It was 7 or 8am before I ventured onto the unit to see a warm and pink Eloise in her isolation cubicle. She was covered in wires, drips, drains and monitors but she was alive. Her chance of life had been given by her donor and donor family, the rest was up to her, us and the medical team.
12 years on ........ We're doing ok, 12 years on I have Eloise's donor's mum emailing me regularly, supporting me. Just because we followed the same Twitter account in November. A chance happening or meant to be ? Now I'm not too sure, we often think things then an email will pop up from the other one. Tonight for example I was out in the garden with Eloise at 8pm taking this picture of her with Zara's balloon. When I check my iPad a email from Rebecca is there that arrived at 8pm. Coincidence probably but there's a connection there too, well we think so, so that's all that matters ;-) x
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