Monday, May 3, 2010

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And, it's all about perspective. 
It's not like anything stupendous happened today. 
No big check in the mail. No drastic change in our lives. 

But...we had a cardiology visit today. It was coming after a semi-rough weekend. Solo mom-ing it with Jaime away, two rough nights, and the beginnings of a cold for Simon. And we had a cardiology visit coming up. That means all those ‘maybes’ running around my head. From the mundane (maybe we'll get a parking spot close to the hospital this time), to the middle ground (maybe he'll be less combative during his echo and blood draw), to the grandiose (maybe this is the time when we'll hear about some drastic improvement in function).

It's just a little more exhausting than usual.

We check in and within 5 minutes are called for our EKG. Nice. Waiting sucks, even with Go Diego Go on the tv in the waiting room, not having to wait is always better than waiting.

Simon did so much better with the EKG than last time and it turned out that even with a size 2 tantrum (on a scale of 10) going on, his heart rate was the lowest that we've seen since we've been looking at heart rates. Pretty sweet.

He then greeted the Echo Tech by name (I really think he said ‘Sara’ as she walked in the door) and only worked a size 4 tantrum into his Echo with some nice quiet time in there as well. All in all the actual testing part of the appointment seemed to breeze by.

Again, no waiting back in the waiting room and after Simon stood on the scale like a big boy (instead of needing to lie down or sit on those baby scales) Rosenfeld was in our room within 10 minutes giving us the results.

So, his heart function isn't any different from last time but while the size of it hasn't changed, Simon has. He's clearly growing and his heart is not.
Take a minute and remember that Simon's heart got to be about 5 times the size it should have been when he was most symptomatic.

He's growing into his heart!! 


While I was hoping to hear about some increase in his ejection or shortening fraction what HunkyPants said next was more than enough.

First, we had no blood draw.  I believe Rosenfeld's exact words were “BNP, ShmeeNP, look at him.”

and then...

"He's got the best energy of any of my patients with Cardiomyopathy. Why don't you come back in 4 months for your next appointment? He just looks so great."

 Remember it was only at the last visit that he said we should stretch our visits out from two months apart to three months. Now we're at 4 months?!! 

It's a nutty nutty mostly great but a little scary world. In my head “what do you mean you don't want to see my son who is in heart failure for 4 months?! What do they teach you at Harvard Med School?! This is where I feel the insanity that is cardiomyopathy. In the same breath he also said (to his med student) "there are kids with his exact heart function that are up on the floor (the ICU) dependent on the IV drug Milrinone." Aaah Milrinone. I remember you well. Thank you and may we never meet again.

Insane for sure, but it also keeps me present. Where Simon is at, with his heart, with his eating, with his gross motor, fine motor, speech, etc,'s all where he's supposed to be in that given moment. There are things to be done, steps to be taken, things to be learned, challenges to be laid before him certainly, and...where we are, where I am as his mother/caretaker is right here. Each step is deliberate and I'm feeling more and more at peace with the pace.

There are times it's good to be a Taurus and the year of the Ox combined. 

And Simon is such a love. He still greets most strangers that pass him with an infectious "Hi!" and is able to move from his EKG and Echo with a lovely 'thank you' signed to each of his techs.  

I am just as excited about my son growing into the type of individual that can thank the person that just put him through an unpleasant but necessary procedure as I am about having my son grow into his enlarged and poorly beating-but-getting-stronger- heart. 

I am more often than not awed by him. I am more often than not awed by my family, immediate and extended. 

I'm feeling quite blessed right now. I took my son who is in heart failure for an EKG, Echo-cardiogram, and meeting with his Cardiac specialist and I feel blessed.

Check out the beginnings of one awesome breakdancer. 


FredKarenZuzu said...

Go Simon, Go Simon...GO GO GO Simon!!!!

Anonymous said...

I am really happy to hear this. :)

-Terra, your ex-upstairs neighbor

Auntie said...
This comment has been removed by the author.
Katie said...

simon i'm so proud of you and your heart!