You know I hate viruses don't you ? Coxsackie B virus, the part of it commonly known as Hand ,Foot and Mouth. I'll never, ever underestimate a virus again.
Anyway I digress . I've been thinking about how small Eloise was 12kg so therefore how tiny her heart would have been and the donor heart. The surgeons skill will always amaze me, such precision. Thinking also of the timing of her transplant the middle of the night and early hours how do these people keep awake and on high alert to perform such delicate surgery ? Truly amazing people. I know we laugh working in the NHS about some surgeons thinking that they are God but actually..........
I can't really write about what happened on this day 12 years ago , as I said yesterday some memories are vivid , tattooed into my head a permanent reminder of pain endured. At some point during this day we must have phoned our family and told them Eloise had, had a heart transplant, no recollection of that conversation, bet it was tearful. Then other memories are really hazy and one day just blended into the next. I'm not sure when she came off the ventilator, I know it wasn't long post transplant. I don't know when the chest drains, pacing wires and various iv infusions were taken down or removed either. I remember her having pacing issues so she was external paced for a while. I remember them obliterating her own immune system with various infusions, so she didn't go into rejection. Honestly though the rest is just a blur. I don't even know how long she remained in her cubicle on PICU. I do remember her first drink of Squash from her beaker and my first cuddle in nearly three weeks, oh and the smell of paediasure puke never leaves you ! All of these things happened in PICU.
I was thinking earlier would it be good to find out more, read her notes, put events into sequence but actually does it matter ? Has the brain carefully erased what it could from my memory to protect me in some way ? I don't know , I do know if you read your child's notes in a lift on the way back from echo you may get a shock ! That's how I found out Eloise had another cardiac arrest in theatre while she was being put onto bypass ! So perhaps the past should remain where it is, for the most part buried but during anniversaries like this moving a little closer to the surface. A little dig around, a little exploration of what you've been through and survived then carefully laid to rest again or locked in that all important box.
I've been asked if we celebrate today and we do but not on a major scale. I guess lots of transplant families do something personal to them to mark the day. It's a hard day celebrating my child's life at the same time another mother is reliving the loss of hers. It's such a weird situation to be in , it's not like Eloise had heart surgery, another child died and became an organ donor. Without a child dying Eloise couldn't have lived. I know I've written about this before, survivors guilt.
Two little girls were lying in intensive care one dying and the other brain stem dead. Without one becoming an organ donor both little girls would have died . No child dies because another needs an organ donor they were dying anyway. So the best outcome you can have in this situation is one child surviving because they received a donated organ and the worst two dying. Eloise's survival gave Rebecca some comfort she found out late afternoon on the 10th June that Zara's liver and heart had been transplanted successfully , 12 years on both girls are still alive because of her daughter.
So today Eloise has received cards, her limited addition Crystal Heart in aid of CHUF, a bracelet from lovely Rachel and Kate and another painted love heart to mark another year of life.
Then the all important cake, 12 candles and 12 chocolate hearts, lets just say Eloise ate a third of it !
Emotionally I actually don't find this day hard, I actually remember less of it than my nemesis day 23/05/2002 . I suppose on the 23rd there was little hope of Eloise surviving the night, no lifeline , no future. Whereas on the 10th even if she'd died during transplant surgery she'd been given a chance and every opportunity to save her had been exhausted . She deserved that chance to live and her donor family gave that to her. I just hope they feel we were the right family to look after Zara's heart for them
Xxxx
Eloise, Rebeca, Zara, Yourself are all truly amazing. Happy Heart day to you guys and here's to many, many more :) xoxo
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