Happy Mother's Day

I've started and stopped four different versions of this Mother's Day post.  

Type and typed, then read and re-read only to erase because what I was trying to convey just wasn't coming across the way I wanted it to. 

I'm trying to say how little I really knew about being a mother until I actually was one myself. 

How I never really thought I could love another little human so unconditionally. 

How I never thought I could protect someone else and their feelings with such fierceness. 

How I never realized in the dark hours of night I would long to hear the shallow breaths of a sick child. 

How much sticks and stones do break bones.  

And words really do hurt. 

And how to control my feelings of anger when those hurtful words were directed at a child of mine. 

That I would happily give up late nights of partying with friends for early mornings at a soccer/football/basketball/volleyball game. 

That I would one day miss the sweet innocence of a little girl in love with a purple dinosaur as Barney went by the wayside for boyfriends and heartbreak and girl drama. 

That my day off would consist of loads of little people laundry who couldn't wash, dry or put any of it away themselves. 

That when those little people could actually do that for themselves, I would miss folding little socks and hanging little shirts. 

That anyone could survive on PB&J, Mac n cheese, and spaghetti for years. 

That I could survive on very little sleep for years. 

That the smell coming from a 14 year old boy's room/gym bag/locker does not actually indicate there may be a dead, rotting corpse of some kind in there. 

That I would argue and advocate for someone else's needs over mine in a hot second.  

I never really thought I would drive a mini-van. Then sell it, only to miss it and buy another one. 

I never fathomed how full my heart would be when I heard someone call me Mommy for the first time. 

Or the bajillionith time. 

How I would feel defeated when one of my little people did. 

And that I had the ability to make them feel less defeated. 

That I would need a Kleenex with me at every game, recital, program, or event because overwhelming pride makes me cry like a baby. 

That little people would rely on me. And look up to me. 

That I would base a home search on school district boundaries. 

And vacation destinations on the nearest Children's hospital. 

That it would be the hardest, most gut wrenching, heartbreaking yet rewarding and joyful job I would ever have. 

That payment for this job would come in the form of kisses and hugs and laughter and misspelled handmade cards. 

I never thought I would have to be so strong. And that I could be so strong. 

If someone had warned me of all of this, I'm not sure I would have done it. 

And I would have missed out on the best thing in life. 

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. 

Wordless Wednesday

It's not really a post without words-but these two pictures don't need words. 

Yesterday this face described Ethan's attitude;

And today;

Ethan was quite creative in figuring out just how to get those fingers in his mouth around his IV, board, tape and cotton and he was quite pleased with himself!  

Long story short as to how we ended up at The Mercy after such a good run.....

Ethan's allergies have been acting up with this lovely Missouri spring weather-70's one day, then 30's the next- so we weren't surprised he has had a little runny nose and congestion.  But Sunday night he was coughing so much and so hard he threw up a few times. We let his tummy rest overnight and opted not to feed him. By Monday morning he looked and sounded terrible, had thrown up at some point in his bed overnight and was purple around his lips. 

After a very short deliberation period of ER time, and sats in the 80's requiring 2 liters of oxygen, and a fever of 100.5, the big decision was not whether he was being admitted, it was under whose service??

So, Cardiology came down, gave him the once over and punted him to General Peds with the promise they would be close by if needed.

As the results started coming back; chest x-Ray no different from last one, blood cultures negative, white count normal, blah, blah, blah, the real culprit showed itself; Human Parainfluenza Virus Type 3. Or HPIV3. This virus is not associated with the flu at all, but rather a common virus. It just doesn't put most kids in the hospital. But Ethan's had it before and needed admitted, so no surprise. The Type 3 though, is a new one for him, and can cause bronchitis and pneumonia so he needs to be monitored pretty closely.   

And I will admit the Purple Team resident we have is pretty sharp and happy to defer to me for all things Medical/Ethan related. 

By Tuesday morning when he had spiked a 103.5 temp and had a gushing bloody nose with a drop in white and red blood count, they decided to make sure it was not his heart and ordered an echo. 

I have to admit, I was prepared to hear the worst-that 8 months later his miracle valve was leaking and he was back in congestive heart failure. But the good Lord must have figured I'd had enough, because the news was good. No, not good, amazing. The pretty little miracle valve that has saved our boy's life is still working as perfectly as the day it was put in!  Woo-hoo and hallelujah. 

His heart rate is consistently dropping, hanging in the 50's most times, and even got down to the 30's last night. That still freaks everyone out, and I would be lying if I said it didn't freak me out too.  Not sure what to make of the old/new bradycardia after we had heart rates in the 80's for so long. 

But since Cardiology seems less than concerned about it, nobody else is either. 

And we all know they are never wrong....if you inferred some tone of sarcasm here, you are completely correct. 

I know that as we age, our heart rates slow down, but come on, he's only 10!

How low does it have to get before we get worried he may just brady down so low one night he doesn't wake up?  

We don't monitor him at home, so I don't have an alarm to alert me to stimulate him to bring his heart rate back up.  And we know it's not his digoxin, they did a dig level to make sure and his EKG appears normal for him. 

But, since it appears fruitless to try and convince anyone else that something's just not right, I'm going to just go with it and enjoy having this little bald guy on my lap, trying to chew on his fingers while we rock out to the Taylor Swift CD. For the 50th time today.