How CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

So, last night, asher was grey.

And i remembered another time when he was grey in his sleep.

Last spring.

When his heart rate was in the 20s and 30s.

As soon as i saw him, i flashed back to those nights. Those scary, scary nights.

Those freaxiating nights.

Those heartbreaking nights.

I didn’t think he’d survive long enough to get the pacemaker. I don’t think i ever put that into words, either spoken or in writing, but that’s what i was thinking at the time.

And so, when i saw him last night, sleeping, grey...

I thought about taking him in to emerg. Because... you know... what if...

His heart wasn’t beating fast enough...

But i looked at him, lying there, so grey, so peaceful.

Not short of breath,

Not sweating,

Not indrawing beneath his ribcage,

And rousing when i moved his arm.

And i thought... well, i can rouse him, so that’s good... and he doesn’t seem distressed right now, so that’s good...

But he is grey.

And he really shouldn’t be.

I called amazing dr b because, honestly, i didn’t know what to do. Should i take him in? Should i just brush this off? He can’t have a slow heart rate anymore. It will always be at least 80.

But then i thought... what if his pacemaker isn’t working properly???

But then, wouldn’t he be sweating? Or short of breath? And un-rouse-able?

But he’s so grey.

This is what this life does to a mom, after a while. He’s been through so much. And i’ve been through so much with him. and i’ve learned a lot. I’ve learned to listen to my instincts, but i’ve also learned all the clinical things to watch for.

So now, whenever he has a symptom, i begin to wonder,

Should i take him in for this? I’ve seen him like this before, and it was bad... but he doesn’t have any other symptoms. Just this one. So should i take him in?

I just don’t know anymore.

It used to be so easy. When he was very young, if he had any symptoms at all, even “just” a runny nose, i took him in. And they always found a problem. Which always ended up messing with his heart in one way or another.

See, he’s had all these symptoms so often, for so long, it’s gotten to the point where i’ve built up a tolerance for some of them. Even his colour wheel, i’ve become so accustomed to it... I can brush off pale (for a few days). I can tolerate blue. But any shade of grey makes me want to vomit. 

So what do i do? Do i listen to the same advice i gave my close heartmom friend, “better to be paranoid than indifferent, because the paranoid mom will be right once in a while.” But what if i’m reacting to something that really is nothing? And now that everything is different post-fontan...

What if i’m brushing off all these things, and they actually are something... but “i’ve seen him worse, so, meh.”

Sometimes, I don’t know how to tell anymore.

On the other hand, i’m tired. Maybe some rest. Or better (and more realistically) yet...

Caffeine!!!!

(have i mentioned i’ve become hooked on lattes?? It’s true.)