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Friday, September 13, 2013

The unfamiliar side of the familiar and our medical miracle

As a journey into the unknown, the last 24hrs have been strangely familiar to me. Pre op prep, the never ending wait, the moment you're told he's out, the mass of wires and machines, the desperately caring nursing staff, the doctors who get that you want them to translate what they just said.

Last night was slightly unfamiliar also. Last time E had heart surgery he woke up with a bang, extubated himself and removed a couple of lines in and was sat up watching Fireman Sam by breakfast. This time was different: they obviously had a struggle before we got to see him; the balance was only found by morning; he still had the breathing tube in they were still trying to sort excessive draining. He's not sat up for breakfast, he still looks like an extra in a hospital drama (non speaking part). Deep down, E is there, he has enough drugs to down a large horse and he's still trying to wave people away - with heavily splinted arms to stop him playing doctor!).

To put this in perspective, a small tale of last time. When he woke with a bang, I thought I was watching the end and just grabbed his hands as medical professionals rushed around him. My body went in to shut down and I was trying to get on to a seat - but I would not let go despite the medical professionals trying to release my grip. I wanted E to know I was there. Inevitably the blood oxygen balance tipped and I went down (mock me if you wish, I still came back for round 2). My first thought when i came round was to get on my knees to be back with E. This s time I readied myself and it was a calmer experience, despite, or perhaps because of, E being in worse shape...

So medical miracle? It may be over stating, but I don't think so. His surgeon has never seen what was in E's aorta - no one has - they have sent it to the lab. They all seem to agree that E was quite lucky to make it to surgery. They seem very surprised that he showed no symptoms - but he was bouncing away on the trampoline last weekend. As an aside, all of this made me realise I was part of a new community - on hearing that the surgeon would be reviewing all of his WS patients to write up what had been found, I said that I thought any findings would be very welcome by the WS community. You see, it is all about our little medical miracle, but everything they find out might help M, C, L, A and all of the others at any age!

So in my head he is tough, resilient and not just a bit of a miracle. At an average of 1 open heart surgery per year of his life so far, he's a miracle who needs a stern talking to but we'll get to that later.

To any WS parents out there, keep every echo appointment - E may not have made the next one.

As a postscript to yesterday, where I hope I credited our support network, we received word today that a lovely friend of ours will be taking part in an obstacle course race called Tough Mudder next week. She is doing this in aid of the Williams Syndrome Foundation. Why? Because of one man, E. So it is true that the ladies can't resist a scar. Please support if you can - it may fund the next cardiac research coming out of some unusual findings in surgery... Who knows?

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