Monday 19 May 2014
Went to GOSH today and it felt relatively positive.
The hospital has a new reception area which looks good: a rainbow frontage and a reception desk that apparently looks like a boat - not quite as exciting as we’d thought it might be given how long they’ve taken to build it, but fun nonetheless, and at least there’s a fake digital pond on the floor containing ‘water’ that ripples when you walk on it – so Little S had a fun time with that.
However, the cardiology clinic is now hidden away – in via a different entrance and then through a corridor marked as Staff Only!
Having said that, we did eventually find it and everything went fairly smoothly, even though Dr D was not actually there having been delayed ‘in the laboratory’ – not quite sure what he was actually doing there and didn’t really want to ask.
So we got to see Dr R the younger registrar instead, who we hadn’t seen before – she was fine, but much more clinical than Dr D, more interested in the stats and the technical details than in finding out and talking about the person.
She said though that Little S looked much better that she’d been expecting given her notes – she thought that a much more poorly child would be coming through the door, and then Little S had appeared, toddling in, laughing and chatting and looking anything but poorly!
Dr D did arrive at the end of the consultation and Little S seemed pleased to see him – he had a quick look at her, checked her echo (and said that her right ventricle seemed to be doing pretty good – although her left ventricle is still doing badly) and told us to come back in a couple of months.
One thing that they both said is that we need to make sure that Little S is drinking lots: she suffers more than ‘normal’ kids would from dehydration as it makes the blood thicker and therefore even harder for her heart to pump around her body. Unfortunately, drinking water is not Little S’s favourite pastime and so I suspect that there may be few heated debates (or tantrums as they are also known) before the Summer is over.
Dr D had previously agreed that there was no need for blood tests today, so we were done pretty quickly and took the opportunity to grab a couple of ice creams and meander through one of those lovely little square parks that you get in central London – there’s one just across the street from GOSH.
Little S had a few little chats with a couple of the park’s resident pigeons and then we made our way back home.
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I’m finding it a little frustrating that, whilst Little S is in this stable period where her condition is not deteriorating, I don’t seem to be able to make any progress in searching for alternative ways forward or for additional glimmers of medical light and hope in an otherwise bleak future.
Dr D did follow up on the couple of attempts that I’d made at contacting experts in paediatric cardiac regenerative therapies, in Japan and in Maryland, but to no avail.
Like me, they sent him no reply at all.
So I think I now need to go more direct and just pick up the phone.
My other course of action is to try and meet up with Dr B in Israel when I go there in the Summer – I’m hoping to furnish him with the latest Little S data from GOSH and a video of some of her antics and smiles, and then have a chat about his thoughts on what we could possibly do next and whether there is anything that could be done in Israel that wouldn’t be done in GOSH.
Whilst on the topic of paediatric cardiac regenerative therapies, although it’s almost certainly going to take too long to help Little S, one astounding story in the papers caught my eye recently about Professor Williams from the Cardiovascular Innovation Institute in Kentucky who is attempting to use 3D printing to create a functioning human heart from a person’s own cells!
Mindblowing stuff and many years away yet but it at the very least adds another glimmer of light and enlarges the scope of the possible.
Maybe, just maybe …
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Last month was Little S’s third birthday – we had a great day in the sun, outside at the in-laws.
Little S was laughing and dancing and really enjoying herself, and why not – she’s three!
I’ve stopped making speeches now at every family gathering saying how wonderful it is that we’ve reached this milestone in the life of Little S and that we never thought that we’d get there in the dark days at the end of 2012.
It’s not because I’m not constantly reflecting on where we were back then and where we might be in the future, but more because I’d rather just enjoy the happiness of wonderful events like Little S’s birthday, or Seder night at Passover where Little S was in full flow bossing everyone around: where they should sit and what they should do – as a result, I find that I’m confining my more morose thoughts to places like this blog, to conversations with close family and friends and to my own mind.
I’m not sure what others focus on when they see or talk about Little S but I find myself slipping back and forth between the world of a wonderful little girl living and loving life to the full and the dark horizon threatening to invade the normal family life that we’ve created.
“I’m a bit puffed out” she’ll say or “I’ve lost my breath” or just “I’m tired” or she’ll cry in her sleep or look a little under the weather and me or J will comfort her and anxiousness will surface in my mind, rising from the deep where it’s been waiting, biding its time through a period of carefree happiness. Is she ok? Will we need to go to the hospital? Sometimes even: is this it?
But I have to keep telling myself that she just needs a minute to get her puff back, or a couple of hours to chill out and wake up properly, or a day or two to get over a little bug – this is most definitely not it.
Sometimes you have to fight a bit to get what you want out of life – Little S does that a lot – and she keeps winning.
