Open Heart Surgery (OHS)
My goodness, its been a long time since my last blog post! But then just a bit has been going on in the last few months for all of us, hasn't it?!
I am considered a key worker as I work in a supermarket, so although there is a lockdown and plenty of people are off, I am still working full time and my spare time is, together with my wife, now filled with schooling my children, or playing with, my 2 children to keep them entertained etc. during lockdown.
Anyway, back to the blog: I'd got to the point where I had arranged a meeting in April with my local NHS Trust heads to discusss issues around initial failings in my sons care and low CHD diagnosis in general. For obvious reasons this meeting has been postponed until lockdown is well and truly over, and indeed the NHS is not under the strain it currently is, which realistically will probably be spring next year, at least.
What I would especially like to focus on now is the positive experience we have also had in the NHS. Like many people, yes we've experienced failings, but the NHS remains the best health system in the world, and for good reason!
Once Sebastian had been diagnosed with having a large VSD in the December 2016 everything good about the NHS kicked in. We were referred up to the specialist Evelina Children's Hospital in London (part of St. Thomas') and put in the excellent hands of head of Cardiology, Dr. Aaron Bell. From this point on our experience has been utterly positive. The Evelina and the team within it are simply amazing in every aspect, from research through to the care shown to both patients and their families.
Sebastian was initially checked by Dr. Bell in January 2017 and from that initial meeting Dr. Bell took his findings to the hospital board of cardiologists, other specialists and surgeons to discuss what was best for Sebastian. The result was what we'd been both dreading and hoping for in equal measure: he required open heart surgery to repair the large VSD. It was just a question of when. We were kept informed at all times over the next few weeks. Initially they hoped to hold off til around May, when Sebastian would be that bit bigger and 8 months old, and hopefully better able to take the very major surgery that lay ahead! Sebastian was very small and 'weak' as a result of his VSD and it produced a perfect storm whereby he needed the surgery asap, but wasn't considered big enough to have it, but wasn't able to put weight on quickly enough as a result of the VSD!
He was closely monitored and over the next few weeks it became apparent Sebastian needed the surgery, and he needed it now! And so it was, with only 10 days notice (more than some people get) we had dropped everything and found on a day in early February, our little family travelling up from the south coast to London in preparation for major heart surgery on our 5 month old son! My emotions just typing this are bubbling up. My 2 children now play happily and healthily around me as I stifle tears from my eyes. The emotions are still raw even 3 years later. Can you imagine handing your child, let alone your 5 month old child, over to have major life and death surgery?
I am considered a key worker as I work in a supermarket, so although there is a lockdown and plenty of people are off, I am still working full time and my spare time is, together with my wife, now filled with schooling my children, or playing with, my 2 children to keep them entertained etc. during lockdown.
Anyway, back to the blog: I'd got to the point where I had arranged a meeting in April with my local NHS Trust heads to discusss issues around initial failings in my sons care and low CHD diagnosis in general. For obvious reasons this meeting has been postponed until lockdown is well and truly over, and indeed the NHS is not under the strain it currently is, which realistically will probably be spring next year, at least.
What I would especially like to focus on now is the positive experience we have also had in the NHS. Like many people, yes we've experienced failings, but the NHS remains the best health system in the world, and for good reason!
Once Sebastian had been diagnosed with having a large VSD in the December 2016 everything good about the NHS kicked in. We were referred up to the specialist Evelina Children's Hospital in London (part of St. Thomas') and put in the excellent hands of head of Cardiology, Dr. Aaron Bell. From this point on our experience has been utterly positive. The Evelina and the team within it are simply amazing in every aspect, from research through to the care shown to both patients and their families.
Sebastian was initially checked by Dr. Bell in January 2017 and from that initial meeting Dr. Bell took his findings to the hospital board of cardiologists, other specialists and surgeons to discuss what was best for Sebastian. The result was what we'd been both dreading and hoping for in equal measure: he required open heart surgery to repair the large VSD. It was just a question of when. We were kept informed at all times over the next few weeks. Initially they hoped to hold off til around May, when Sebastian would be that bit bigger and 8 months old, and hopefully better able to take the very major surgery that lay ahead! Sebastian was very small and 'weak' as a result of his VSD and it produced a perfect storm whereby he needed the surgery asap, but wasn't considered big enough to have it, but wasn't able to put weight on quickly enough as a result of the VSD!
He was closely monitored and over the next few weeks it became apparent Sebastian needed the surgery, and he needed it now! And so it was, with only 10 days notice (more than some people get) we had dropped everything and found on a day in early February, our little family travelling up from the south coast to London in preparation for major heart surgery on our 5 month old son! My emotions just typing this are bubbling up. My 2 children now play happily and healthily around me as I stifle tears from my eyes. The emotions are still raw even 3 years later. Can you imagine handing your child, let alone your 5 month old child, over to have major life and death surgery?
So many had done it before us, and so many will have to do it after. Yet in that moment, it's just about you, your child and your family. You get tunnel vision. Nothing else, and I mean nothing else in the whole world, matters. There could be great geopolitical upheaval, heck there could be a pandemic on, but right at that moment it matters nought. Your child, your reason for living is going to have open heart surgery. They're going to be hooked up to a myriad of machines, have wires stuck everywhere on their body and tubes going into their body in their chest, neck and stomach and be cut open until their heart is visible. The tiny heart will then be cut into by highly skilled but nonetheless adult sized fingers, to reach the area that needs repairing, a patch skillfully sewn in, then everything sewn up and a large plaster stuck over the wound.
Your child will then be in an ICU bed, still hooked up to all those machines, still with all those tubes in their body, and that's when you finally get to see them. You try to hold it together for the sake of your family and the nurses in the ICU. Hold it together, don't break down. Be strong. That's all you tell yourself. Be strong. Can you imagine that happening to your child? Can you imagine seeing your child lying prostrate in an ICU bed, helpless, wanting you to make it all better, wanting just a cuddle, but you can't cuddle them, not yet. Their eyes looking up at you, pleading for comfort, and all you can do is look back at them, make some cooing sounds and just try to be strong, don't show you're scared, you're blaming yourself for something that's not your fault and while your insides are ripping themselves apart as you desperately want to hold your child, take them away from all this, and make just everything ok.
Your child will then be in an ICU bed, still hooked up to all those machines, still with all those tubes in their body, and that's when you finally get to see them. You try to hold it together for the sake of your family and the nurses in the ICU. Hold it together, don't break down. Be strong. That's all you tell yourself. Be strong. Can you imagine that happening to your child? Can you imagine seeing your child lying prostrate in an ICU bed, helpless, wanting you to make it all better, wanting just a cuddle, but you can't cuddle them, not yet. Their eyes looking up at you, pleading for comfort, and all you can do is look back at them, make some cooing sounds and just try to be strong, don't show you're scared, you're blaming yourself for something that's not your fault and while your insides are ripping themselves apart as you desperately want to hold your child, take them away from all this, and make just everything ok.
Sorry, I will break off and return to this another day. I'm no longer going to pretend to be strong, I'm not. I'm broken. And I can't see the screen through the water in my eyes.
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