Difference of opinion....

Ethan is definitely on the mend, looking better today than he has all week. 

He's off oxygen, tolerating full feeds and looks and sounds better. 

He even showed off a little today by sitting up. 

But, there's always a but when it comes to the bald guy, right?  But... His heart rate has consistently dropped every night. As low as the 30's.  And last night his nurse refused to give his heart meds until the team came up and looked at him because he was at 45- and his heart meds can drop his rate and pressure even more. 

The Purple Team docs have been fantastic, and they seem (or are doing a good job of acting like) they understand my worry.  Which is why they have asked Cardiology to weigh in unofficially. 

Dr Woodhouse-FP Resident in charge of stinky right now seems to 'get it'. He feels we are dealing with a 'lesser of the two evils' scenario. Not on Digoxin and his bradycardia may go away, but not on it and there's a really, really good chance Ethan goes back into severe congestive heart failure.  Like last year. When cardiology said but it's not his heart.  

On Digoxin, he may have continued bradycardia, but we hopefully avoid a repeat of 2011. And 2013. 

Digoxin=bradycardia

No Digoxin=CHF

Which do we prefer?

Neither, to be perfectly honest. 

Because our little bald guy just doesn't play by the rules, we have to choose which evil we can live with. 

It's so frustrating, because  his heart rate just seems to drop and drop for no reason. And because he doesn't appear to be in any distress, Cardiology says it's all good, ok, no problem. 

It's just sinus bradycardia. 

It's his new normal. 

Nobody ever died of bradycardia. 

Was the exact statement I got. 

Hmmm, I guess not, but what about my neurologically challenged little guy?  What about if he gets down to say, the teens, and his little brain can't tell him to speed it back up?  Cause they kept using his disability last year to explain why his valve failed, again, and why he can't tolerate pulmonary insufficiency, so shouldn't that come in to play here too?  Oh, wait,  that was when it was in their favor, not mine. 

As long as it's beating, it's ok. 

Even if it's 10 or 12?

Nobody ever died of bradycardia. 

No, I guess it's when the heart actually stops beating that you actually die, right?

Let's discount the slow rate at which the rest of his vital organs are perfused while his heart is beating so slow?  Like his brain?  

And we don't monitor him at home, so I don't know he's going so low and whether or not I need to intervene.  Because here, at the hospital, when it drops to a certain point policy states you start compressions, right?  Right......however.....

So, basically, you're telling me his heart will not be allowed to stop at the Hopsital, but at home it's ok?

Hmmmmm, interesting concept. 

But his heart won't stop. I promise. 

That's an awful big promise to make Ms Darcie, Cardiology NP. 

I sure hope it's one you can keep. 

Cause I don't forget promises like that.  

So to pacify me they are doing a holter monitor tonight. 

And I'm calling Boston. 

Don't get me wrong, I'm not mad at Cardiology, and I'm not unhappy with our care. As a matter of fact, this is the first time in the last 4 years that I feel like they are taking me seriously from day one, not waiting for Ethan to decompensate.  And for that I'm very grateful and comfortable with him here. 

And I'm very grateful it's been a year since we've had an admission with him. And that he went all winter without a serious illness, and we've been off oxygen for 8 months, and he's gained 11 pounds, and all of those things I fought so hard for by taking him to Boston. 

I just wish he could get a break.

That he didn't have to fight so hard.

 All. 

The.

Time. 

But I won't stop fighting for my little guy. 

In the meantime, in the words of Elsa, and Ethan's new favorite movie we've watched a dozen times this admission, (thank you Carissa!)

#tswifthassomecompetetion

 I've got to just

Let it go, let it go

You'll never see me cry
Here I stand
And here I'll stay
Let the storm rage on

The cold never bothered me anyway. 

Loving some Frozen!

Not loving his holter so much.