Sunday, August 02, 2009

August 2, 2009

Well, there goes July. I really can't believe another month has gone, and we're two and a half weeks into the summer holidays.
Not much news really - I just wanted to remind you all that we've got Charlie's outpatient appointment at the hospital here in Cardiff tomorrow morning, and yes, I'm VERY anxious about it. We'd really appreciate your positive thoughts/prayers/good vibes for a good appointment.
If you're feeling miserable, I wouldn't bother reading on - I can feel this turning into a rather melancholy rant...
Charlie can't wait to go and see his doctor - he was telling me today that his favourite bit is when they put the 'peg' on his finger (to check his oxygen saturations).
I have to admit that I go into a cold sweat as they attach the sats monitor, and find my eyes glued to the screen, praying that whatever his O2 reading is, it starts with an 8.
I'm really pretty frightened that he might well have dipped down into the seventies now, and while he's absolutely fine, and there are many kids with lower numbers than that, I'm much happier with everything staying the same, and with him sitting merrily at 82ish.
I'm also hoping that his tricuspid valve won't have become massively leaky over the last nine months. It does get progressively worse as a child nears their Fontan, but I just don't want anything to cause us to have to be admitted in a hurry.
And another thing that's worrying me is that the consultant said at the last appointment that he might need to do a blood test this time to see how well Charlie's heart is functioning.
Apparently there's something or other that is evident in the blood if the heart is having to work very hard - even if the child is appearing well generally.
I am really concerned that nothing happens to turn Charlie against hospitals, with his Fontan looming. We've worked really hard to overcome his phobia of sticky plasters after his experience after his cardiac catheter, and I really don't want him to develop an issue with needles.
He was a little star when he had his cannula put in for his cath, but I don't want a bad experience to change everything - particularly because he'll need regular home blood tests when he's on warfarin.
Oh alright, I'll admit it - I just don't want people sticking needles in my baby.
I've just finished ironing Charlie's red checked shirt for tomorrow.
He only ever wears red shirts when we go to the hospital because, as far as I'm concerned, it makes him look pinker and less blue.
I know it's a totally stupid thing to do because a/ the doctors can tell at twenty paces how cyanosed a kid is, and b/ just in case the doctors are having an off day, the sats monitor will do the job for them, and c/ if he's that blue, we need to do something about it, but in my stupid head, if I can just make him look nice and pink, and make sure he walks REALLY slowly to the sats machine so he doesn't get puffed out, and takes some DEEP breaths before they put the peg on his finger... maybe we can buy ourselves a few more months before we have to take him back to Birmingham for his surgery.
Do I sound hopelessly desperate? Well, I am.
I'll update from my phone tomorrow to let you know what his sats are doing, and will write a proper post tomorrow night. Our appointment is at 11.15.
Anyway, I'd better sign off for now, before everyone starts thinking I'm totally mad for putting my son in a red shirt to make him look pinker.
What? You already think I'm totally mad? Oh well. Such is life.

PS Here's a few pics of Chas in the bath tonight with a fab new bubble blower that Nanny and Grandpa gave him this afternoon for being brave at the hospital tomorrow! (See what faith they have in him - they know he'll be brave even before the event!)
See how neat and lovely his scar is? I hate the thought of it being red and angry again. I know without it he wouldn't be here, and I'm grateful for that, but it doesn't stop me hating the fact it's got to happen. (Wish I had proper 'smilies' on Blogger - I want a sad, frowny one right now! Anyone know how I can enable smilies?)

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