Friday, May 7, 2010


Locations of visitors to this page

Right out of CSI: Oakland. Simon has a rough night on Wednesday, not handling his overnight feed, retching and barfing every hour and a half. We bring him into bed with us 'round midnight so as to be able to comfort him. Even through my sinus medication haze, I am still painfully aware of how crappy my little man is feeling.

I have no idea how crappy though until I wake up. Jaime has just lef to go to the gym, and it's barely 6am when once again, the little man starts sqauking and waking uncomfortably up. I turn over to discover that he is swimming in his own crap. Liquid poop all over the bed, all over Simon, all over me.

A blow out like I have not seen before. The bed resembles some awful tv show crime scene only now I can truly understand why they're alwasy wearing masks and gloves. Simon, to my dismay, has not yet grasped the defcon 1 situation and goes to rub his eyes and hair with his poop covered arm.

Never before have you seen two people stripped and in the shower so quick.

Poor guy. He's still trying to wake up and I have him soaped up and sputtering before he can even say "diyeeeee" (meaning 'done').

After the latex gloves are firmly on, the bed stripped, and three loads of laundry lined up, we are ready to start our morning.

After arriving late to our audiology appointment (to finish ruling out possible hearing loss), we are promptly sent back to the scheduling desk as they can't test someone that has fluid in his ears. Another ear infection?


Riiiight. Simon has had a cold. I forgot to mention the snot given all of the other body fuids that I was dealing with this morning.

So we arrive early to our early intervention program a little worse for wear but I figure/hope that the singing and familiar play of PIP will settle the boy down.

We're not five minutes into getting settled there that I hear a low rumble come from Simon's stomach and then the tell tale flow and following stench.

I know why they call it the 'runs'. That's what we do to the bathroom where once again I am an ironic imitation of a scene from a movie where the baby has pooped and the Micheal Keaton (Mr Mom) or Eddie Murphy (Daddy Daycare) character is overwhelmed with the clean-up.

This is however, real life and while this technology may be in the near future, smell and touch are never a part of watching said scenes. Sight and sound maybe but even then you can't quite capture the very distinct odor that comes from a rotten baby gut or the special glint that flourescent lights can give off of a slippery poop covered tush.

After cleaning Simon, myself, and the bathroom floor and walls, we are ready to go back to the main play room and see if Simon can hang for some morning singing.

He cannot.

It's not even 10:00 are on our way home again. For sleep, for some Pedialyte and rest.

Five such poops and not really being able to keep down much food bring us to 4:00 and the pediatricians office. I ask her point blank Ass or ears? Which would she like to hear about first.

Turns out there is fluid in his ears but they don't look infected. He does likely have the stomach virus that's been going around.

Pedialyte for the next 24 hours it is.

Pedialyte, plus a rough night, plus a 6 hour nap today, plus no peeing made for a very worried mommy.

It's hard to feel the regualr concerns (is he dehydrated? getting enough fluids? sporting a fever?) and then worrying about the exrtas (will it be ok giving meds with just pedialyte? Is he retaining fluids? How will this interact with his diuretic meds? Do we need IV fluids? what's this one going to do to his heart? I really don't want the present of being in the hospital for my birthday.)

It doesn't help that in the last couple of days there has been all this talk on our Children's Cadiomyopathy listserve about kids that have needed heart transplants after not really showing any symptoms and that it's been children across the board of Cardiomyopathy and not jsut those cases of Hypertrophic Cardiomyopathy (where transplant occurs in greater numbers) versus Dilated Cardiomyopathy like Simon has.

Doesn't help at all.

Not one bit.

I don't ever want to go down that road again. That early September weekend was too hard. I don't know how I would do it again.

It's now 5:27pm on this Firday eve and Simon is singing the "Lulu the Clown' song. We will try for a rousing sing along of 'Shabbat Shalom', 4 ounces of Pediasure (not Pedialyte) and see how he does.

Here's to the good night that we all need.

Monday, May 3, 2010

Locations of visitors to this page 

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.