Saturday, January 16, 2010

January 16, 2010

Charlie's blog has passed 11,000 visitors!
How cool is that! I find it hard to believe that so many people check in (often daily!) on what our lad has been up to!
Thank you, everybody, for taking the time to visit, and for all your warm thoughts, prayers and positive vibes over the years. Long may it continue! Please feel free to leave Charlie a 'hello' message via the comments, or via the email in my profile if you'd like to - he always loves to hear from new friends!
I was looking at one of the little visitor counters on Charlie's blog earlier - the little map down in the right sidebar - and by my reckoning, we've had visitors from about fifty different countries over the past year. I think the map resets itself to zero at the end of this month, so I'll wait until then and will post a list all the different countries. Bet you can't wait!
Charlie's doing so well at the moment. He's had a growth spurt lately, and has really shot up. Now he's finished stretching upwards, he's starting to put on weight again which is terrific - the more pounds the better as far as his surgeons are concerned.
We'll probably be at the hospital here in Cardiff for his regular checkup next month, so we'll find out exactly how much he's grown then.
It's funny, I'm not too anxious about his checkup this time round - I know he's doing well at the moment, and even if his sats have dropped a bit, it doesn't feel like it matters too much because he's on the waiting list for his surgery anyway! Does that make sense?
It's almost like, up to now, his oxygen saturations have HAD to stay as high as they have always been, because I haven't wanted him to be put on the list for surgery. But now he's been put on the list anyway, mainly because he'll be seven in November, it's almost like it doesn't matter so much.
Obviously, I'd much rather he still be satting in the 80s when we go next month, but his Fontan is pretty much a definite for this year, so I'm more worried about that now, than whether his sats have dropped a point or two! Every cloud has a silver lining, eh!
Having said all that, Charlie woke up last night with horrible pains in his foot. I don't know if I've mentioned this on the blog before (I'm sure I have somewhere!) but he often wakes in the night with sore feet and legs.
Sometimes it's just a case of him waking, telling us his foot is sore, us applying a hot water bottle, giving him a quick cuddle, and he goes back to sleep.
But other times, like last night, he wakes, almost hysterical with pain. He clutches his foot/feet, sweating with pain, shaking and shuddering, sobbing and retching. It's horrible to see, and there's very little we can do about it, other than hold him and stroke his hair until it passes.
Heat seems to help a little, as does rubbing or massaging his foot. Paracetamol usually helps a bit too, but it takes a while to kick in.
Nobody really seems to know much about what causes this, but night-time foot and leg pain is very common among heart kids.
Charlie's reaction to, and description of the pain leads us to believe that it feels like a terrible cramp, but it carries on for much longer.
We think it's most likely something to do with his circulation - which is quite ineffective to start with because he's missing the left side of his heart.
Added to this, everyone's blood pressure drops when they're sleeping, which affects the blood flow to his limbs even more.
Plus his medication serves to open his blood vessels so his heart doesn't have to work so hard to pump blood... thereby reducing his blood pressure further.
In the grand scheme of things, having to deal with night-time foot pains, and having to nag Charlie more than most with regard to his eating, aren't that big a problem.
Many children with HLHS have much greater mountains to climb.
But I'll be very glad if his next surgery helps to resolve the problem of his sore feet, because I hate to see him hurting.
We're going up to Birmingham next week, all being well, for Charlie's chat with his surgeon - his list of questions for Mr Barron is getting longer by the day. I'm so proud that he's taking an interest in his own health care, and that he wants to be a part of the discussion.
Anyway, I'd better fly - it's quite late, I'm tired, and I need to help Charlie finish his mammoth pile of homework tomorrow. (He's already drawn and labelled the human skeleton, along with the internal organs and external body bits... now he just needs to write and illustrate a diary of his time in the snow AND document his knowledge of number doubles up to ten. I'm sure I didn't get that much homework when I was six. Come to think of it, I don't think I had any homework when I was six!)

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