Saturday, August 29, 2009

August 29, 2009

Just a really quick post to put with a slideshow of a few pics of our weekend 'up north'! Charlie had a wonderful time with Aunty Ray and Uncle John, and particularly enjoyed playing with their two dogs.
We all went on a ferry trip across the river Mersey, which was lovely (and nostalgic - I grew up there!) and had a wander around the docks at Liverpool.
The next day, we went to Chester Zoo, which is ENORMOUS. Charlie had a wonderful time looking at all the animals, and we were particularly fortunate with the weather - it had been forecast to be heavy showers all day, but we only got caught in the rain once, very briefly (as you can see in the picture of Charlie in the marmot enclosure below!) but for the rest of the day it was dry and pretty warm.
We decided to go to the Dan-yr-Ogof caves and Dinosaur Park on our way home today, and Charlie loved every minute. He really enjoys exploring caves, and was really excited when we had to walk between two underground waterfalls.
The caves are actually licensed to hold marriages there - they were playing Pachelbel's Canon over the sound system as we walked into the biggest cave (called the Cathedral) and it was pretty spectacular. I imagine it would be a fabulous venue for a wedding, but the bride would have to wear hiking boots rather than Manolo Blahniks, and I can't imagine a white dress would stay very clean on the way down into the caves!
The dinosaurs were also a big hit with Chas - especially the ones that were wired up to roar! He was particularly pleased to find a sign about one called a 'Chasmosaurus'!
It really was a lovely, busy weekend.
Charlie doesn't go back to school until next Thursday though, so we're planning a few more fun days to last until he breaks up for half-term!
We've had a bit more info from the hospital at Birmingham, with Pete speaking to the surgeon's secretary earlier this week, and another letter arriving a couple of days ago.
Firstly, we will be meeting with Mr Barron - the surgeon - and one of the cardiac liaison nurses on October 30 for a chat about the surgery.
Charlie's already come up with a list of questions for Mr Barron.
He asked me if the doctors could possibly wake him up while they're fixing his heart '...because I'd REALLY like to see my heart, Mum. I've seen loads of picture of ordinary hearts like yours, but I want to know what my special heart looks like.'
Hmmmm. I told him that they couldn't wake him up because he has to stay totally still, and Mr Barron wouldn't want him wriggling around to see what was going on. Lame, I know - but what else could I say?
Charlie's very curious, and has been asking lots of questions about what will happen when he has his heart fixed. I explained about the ventilator, which he will remain on in ICU after surgery until he is awake enough to breathe for himself. He has seen the pictures of himself on the vent after his first surgery, and the idea of it doesn't bother him.
I said that I will take a few pictures of him while he is asleep and ventilated, so he can see what was going on, and so he can put them in his hospital scrapbook afterwards.
Charlie's response to that was: 'Oh great! Why don't you lend the camera to Dr Barron then, so HE can take a picture of my heart when he's fixing it?'
Er, yeah. Great idea, Chas.
I have to say though, I'm very glad that he seems to have taken everything on board so far. As a result, he's really interested in human biology in general - one of his favourite things to do (usually when he's trying to delay saying goodnight!) is to identify where his various body bits are, and get me to test him on what they all do!
He's pretty good on the heart (obviously!), lungs, diaphragm, kidneys, stomach, intestines, ribs and liver! The big question tonight as I was tucking him into bed, was 'What's the point of my belly-button?'
Never a dull moment with our Charlie!
The other bit of (slightly unexpected) news to turn up in the post from Birmingham, is that the doctors have decided it will be for the best to insert a permanent pacemaker when Charlie has his Fontan surgery.
We knew - because of his intermittent heart block - that they were planning on inserting the wires when he has his Fontan, but were under the impression that they wouldn't put in a pacemaker unless he started showing signs of needing it.
At present, his heart block (and resultant funny heart rate) only happens every now and again, and he doesn't show any signs or symptoms at all. However, it's pretty important when a child is functioning with a Fontan circulation that he remains in sinus rhythm all the time.
Hence the decision to put in a pacemaker.
In the grand scheme of things, this is probably a good idea - better to get it all done while he's under anaesthetic, rather than possibly have to go back in six months or a year. It also means his heart will be getting the best possible support to keep it working nicely, for as long as possible.
In terms of lifestyle issues, it doesn't seem to be a particularly big deal, as many of the things that you can't do with a pacemaker, Charlie can't do anyway.
Contact sports are out (but they've always been a no-no, both because of his poor exercise tolerance, and the fact that he'll be on warfarin post-Fontan)
He'll need the pacemaker replacing every five years or so while he's a child, and every ten years or so as an adult, but this is a very minor procedure, and patients are generally only in hospital for 24 hours or so.
As far as I'm aware, having a pacemaker put in at the same time as his Fontan shouldn't affect his recovery time adversely at all.
I have to say though, my main concerns about the pacemaker are very superficial ones - I hate the thought of my beautiful boy getting ANOTHER scar on his body, and having a big lumpy foreign object stuck underneath his skin for all to see.
Pacemakers are usually put in just below the collarbone, but I believe they're often put in the abdomen for children. No doubt we'll be given all the details when we speak to the surgeon in October.
Of course I'm glad and grateful that pacemakers are available, and I'm fully aware that there are far worse things that could be happening, but Charlie's my son, and I'm allowed to feel sad about it on his behalf.
He's not sad at all, mind you - we saw a display of pacemakers at the Science Museum in London the other day, and I took the opportunity to show them to him then, and said that he might be having one, one day, although I didn't realise then quite how soon. He understands that it's like a little engine that will keep his heart beating at just the right speed, and that he'll probably have it forever.
His response to being told he'll have a pacemaker when they fix his heart next time?
'Wow! I'll be like a dalek with an electric engine thing inside me! And it'll make my heart even MORE special, because I don't know anyone else with an engine inside!'
I know I'm biased, but is my son brilliant, or is my son brilliant?!
Oh, and the other rather fantabulous bit of news is that the surgery is definitely NOT happening until 2010! Hurrah. The routine waiting list is 6-8 months, so we're looking toward next spring.
So we're really looking forward to Christmas now!
Enjoy the slideshow!

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