Wednesday, June 09, 2010


I spoke to the consultant today.  I still don't have a date for our appointment at the hospital, but the doctor said that Charlie's artificial pacemaker is working fine - the reason his atrium is pacing too fast is because his heart's own inbuilt pacemaker is telling it to.
The 119 beats per minute (bpm) Charlie was at on Monday is too high.
While this isn't a problem short-term, if Charlie's heart was to continue beating that fast permanently, it would inevitably start to wear out.
And we don't want that.
I think the initial plan will be to do a holter monitor over several days - possibly a week - to see how often Charlie is in atrial tachycardia, and then take things from there.
I know he's not in it all the time because I've been taking his pulse since he came home from school, and he was at 98bpm before, which is much more acceptable. (We like anything below 100!)
He's asleep now, and his heartrate is about 78bpm. This is still a bit fast for a resting heartrate, but at least I know he's not permanently jammed at 120bpm.
I'm not even going to get started on the emotional ramifications of this new problem. (For Pete and me, that is - Charlie is fine and dandy, and as asymptomatic as ever.)
If I start, I think I'll fall apart.
Suffice to say, when Dr Onuzo mentioned implanted defibrillators today, I just about passed out.
I love my Charlie-boy so very much. I don't want him to have to go through anything else - I just want him to be able to carry on enjoying the wonderful, energetic new life he has discovered since his Fontan.
Once again, I'm in the unhappy position of wanting to snatch up my Charlie-Barley and run for the hills.
Please, keep sending positive thoughts and prayers in Charlie's direction.
We so desperately want this 'something' to be nothing.

Sent from my iPhone


cici said...

I am the worlds biggest worrywart, so I sympathize and understand what you are going through. I think the unknown is the hardest part, along with just wanting a child to be healthy and enjoy life.
I just wanted to let you know that I will be stopping by Church tomorrow and will put your sweet boys name in the Prayer request book and a prayer for you to feel peace instead of that nasty worry.
Give Charlie a hug from his big fan :)

The Cryer Family said...

Oh Ali, I hope things are resolved as fast as possible. Thinking of you,
Helen x

Heather said...

asher has had bouts of tachycardia, with his resting HR going as high as 186. they put him on carvedilol, which actually worked wonders for him, bringing his HR down into his normal range. they stopped it in march when they thought that might have been the cause of the brady. turns out, not so much. but he doesn't need the carvedilol anymore, so that makes me happy. but i thought i'd give you a heads-up. <3