Monday, August 03, 2009

August 3, 2009

Well, I'm a considerably less-stressed mum today! Charlie's hospital appointment really couldn't have gone any better. (As I said in my post from my phone - I'm sure it was the red shirt that did the trick!)
When we arrived at the hospital, Charlie was weighed and measured - 21.5kg (47lbs) and 113cm (3ft 7in) respectively. His O2 sats (as I posted from my phone) were sitting happily between 80-82%, which made my day! I was really hoping they'd still be in the 80s.
Charlie behaved brilliantly when he had his ECG (he kept all the little stickers they put on him to use in his doctor's kit!) Although his 2:1 heart block showed up again (he's still missing beats periodically because the electrical impulses in his heart sometimes don't make it all the way to his ventricle) his consultant wasn't too bothered, because his heart is in normal sinus rhythm most of the time. Charlie will most likely need a pacemaker at some point - but that's not a big deal in the grand scheme of things.
Then we went to see Dr Onuzo for Charlie's echo, and Chas behaved like a little star yet again. He lay really still and was really interested in everything that was showing up on the screen. His tricuspid valve is still only leaking very mildly which is great. Normally by the time HLHS kids are Charlie's age, the tricuspid is leaking quite severely (which improves after the Fontan anyway) but Charlie's is still much the same as ever.
His heart function is great and his consultant was pretty stunned by how well Charlie's doing. He just kept looking at him, looking back at his notes and saying 'He's amazing. He's just amazing.'
I have to say, those are pretty much the best words I could ever hear from Charlie's cardiologist... with the exception of 'Oh my goodness, he's grown another ventricle'... which isn't too likely, I guess!
After Dr Onuzo had finished Charlie's checkup, he told us that Charlie is a perfect advertisement for a child with HLHS. And he continued: 'If I could show Charlie to every parent with a new HLHS diagnosis, I don't think anyone would ever terminate again'.
I have to say, I was very touched by his words, and by how pleased he was with Charlie's progress.
He told us that Charlie's still not showing any signs of needing his Fontan just yet, and that he sees no reason at all why he'll need it this side of Christmas. Hurrah! That's JUST what I wanted to hear. (I was also pretty chuffed that there was no need for any blood tests today!)
The consultant will write with his findings to the hospital in Birmingham (where Charlie has his surgeries) and hopefully the doctors there will agree with what Dr Onuzo says, and we'll be free and clear (all being well) until 2010!!!
Dr Onuzo plans to repeat Charlie's 24-hour holter monitor again sometime soon, just to keep an eye on his heart block, but other than that, we don't have to go back to hospital for six months! I feel so free!!

I just wanted to say thank you SO much to everyone for their messages over the past few days - wishing us well for Charlie's appointment, and congratulating him on how well it went! I've had so many text messages, emails, messages on Facebook and on various heart forums. It means such a lot to us to know so many people care about Charlie.

I'm attaching a couple of pictures I took after we got back from the hospital today - Charlie decided he wanted to put on his doctor's costume and play hospitals with his dalek! Take a look at the picture below - the dalek has an oxygen mask and a bandage on its eye-stalk, ECG stickers all around its middle, a cannula stuck on its head and Chas is injecting it with a large and dangerous-looking syringe! We love hospital play!!


Jennifer said...

Yeah. So glad to see such a great report!

Jennifer said...

thanks for your message. :) I was glad it went well too.