March 17, 2008

Hi everyone, this is just a quick post to update on how we got on at the hospital today.
Charlie's doing really well - his oxygen saturations are still really good at 84%, and his heart function is excellent too. The leakage across his tricuspid valve is still minimal - especially considering how old he is now.
He was really good at the hospital, although his experience with the elastoplast post-catheter has made him a bit worried about sticky things like ecg tabs. Once we'd explained that it wasn't the same type of sticky, he was ok and let us take them off with no trouble. The doctor even gave him a few spares to stick on the cars he'd taken with him!
His intermittent heart block is still present - for the first time ever at our local hospital, it happened while the ecg machine was attached to him! It's still not affecting him though, and it isn't causing him any problems.
It's pretty certain that the doctors will insert permanent pacing wires when they do his fontan though, to enable them to give him a pacemaker, should he ever need it, without having to crack his chest open again.
In a way, it's good that he'll have the wires put in at the same time as his next surgery, because quite a few of the other children with hypoplastic left heart syndrome have needed pacing as they get older, so if it saves him having to have another major surgery some time down the line, that is fine by us. However, he will only have a pacemaker if and when he needs one - the wires will just be tucked away, unused, until then.
It's silly really - in the grand scheme of things, having a pacemaker is not important at all, and if it enables Charlie to enjoy life as much as he is now, it's a good thing. It's just hard for Pete and me to get our heads around the fact that if he does need pacing, there will be more hospital appointments, more surgeries to replace the wires/batteries when they wear out, plus the restrictions that a pacemaker brings. It's also hard to think about Charlie having to get more scars on his body. It's so true, as a parent, that you'd go through anything yourself if you could spare your children from it. Unfortunately we can't do this in Charlie's place - we just have to be there for him, to help him get through it as best he can.
One positive thing we learned today, is that because Charlie's sats don't seem to be dropping, he may well not deteriorate massively pre-fontan - it may end up being a case of doing the surgery when it's most convenient, rather than because he really needs it. This is good, because we weren't looking forward to watching him start to really struggle.
Once again, Charlie's consultant reiterated how positive the outlook is for kids with HLHS is these days - the surgeries have evolved so much. This is good to hear, and allows us to start stretching the timescale of our dreams.
Not much more news really - we go back for another checkup in six months, but the doctor has asked that Charlie has a 24-hour holter monitor every three months, just to keep an eye on what his intermittent heart block is doing.
We've been so fortunate thus far with Charlie's health - and we know that many of Charlie's heart friends aren't so lucky. Even so, it makes us a bit sad to think that we're needing a bit more medical intervention than we have previously.
I don't really know why today's appointment has made me feel sad - particularly because all the results were so good, and the doctors were really pleased with Charlie.
I think maybe it's because we've had to seriously think beyond the fontan in terms of medical treatment for the first time. The fontan is the third major hurdle that we've always known Charlie will have to cross, and it becomes so all-consuming, that you almost forget that he may have more medical hurdles to jump beyond it.
He's such a superstar though - he's done us proud so far, and we have every faith that he'll continue doing the same.
Anyway - melancholy moan over. Normal cheery service will resume with the next post - after all, it's the Easter bonnet parade on Wednesday!