Friday, August 21, 2009


Locations of visitors to this page

Normally our medical visits are categorized as f0llows:

Cardiology visits- the least fun. They almost always include a blood draw and usually take upwards of two+ hours

Pediatrician visits- mostly fine and even vaccinations and extra flu shots are over fast.

GI visits- No biggie except for the height measuring which Simon does not like (due to the need to be lain down on his back)

So when our cardiology visit this past Tuesday went so smoothly (minus the very short freak-out during his Echo) I was thinking that the rest of the week would be cake.

Not so, not so.

It started with me, Laura, waking up Thursday morning with what hinted at a sore throat. Simon seemed fine. So in our special co-dependent way all seemed fine until we hit the pediatricians office.

Simon was chillin', checking out the fish tank and a nurse that I've never seen before hands me a "development survey". First off it's the wrong month (she handed me the 18month old child survey) and second.....where do I start......

Simon spent 4 months in the ICU. He is amazing and incredible and surviving and thriving despite being in heart failure, vomiting several times a day, having a tube sticking out of his tummy, and taking 6 different medications that each come with a long list of possible side effects. Really, he's rockin' it given all that.

And, it hurts my heart when I'm checking off that fucking list and almost every answer out of a possible 'yes' 'Sometimes' or "not Yet' is a 'Not Yet'.
Not yet
Not yet
Not yet

He's behind in every category. I think I had maybe one or two Yes's out of the whole dang thing. I know it makes sense and really he is a miracle child AND I gotta tell you, it sucks to have it come at you all at once that your child, that most precious little ball of life, that you are working so tirelessly at not just keeping alive but teaching to savor and delight in each moment (as you are trying to do as well), that this child is not quite where he's "supposed to be".

I know that given everything that Simon has been through, he is just where he is. It would be extra ordinary and most unlikely for him to be just like all the other kids his age. And I know that every child is unique and different.

Still, we as a culture have created these 'ranges' and when you fall outside of them, there are a whole host of other things that can come into play. Simon is outside the range. It's often a lonely and hard place to be...for both of us. *Cue rolling tumble weed and a melancholy cowboy song*

And I know that almost every second of every day. I don't have to focus on it since there are so many other things to focus on moment to moment. So, when it's all lain in front of me in a matter of minutes, sitting neatly on two pages (double sided), on a clip board in a doctor's office, on a day when I'm starting to feel the tingles of a cold coming on, moments before I have to hold my son while he gets his vaccinations (extra ones for him with the coming flu season), it's not a happy moment.
It's now Sunday and I'm going to finish this.

Simon and I are both starting to feel better. We're no where near over this cold, Simon managing it so much better than I am, but at least we'll start the week on an upswing.

Jaime has been a saint all weekend and Abby is going up for Sainthood as well.

Simon is just perfect, three words and still crawling, he is right where he should be. Here's to a gentle week ahead of us.
Such a punim on this kid right?!!

punim=face in yiddish

Tuesday, August 18, 2009

Rats Beware

Locations of visitors to this page
Today has been an exceptional day. Aside from the pasta dinner we just had, I am feeling light as air.

The day started out same as usual. Simon and I went about our business (morning feed, morning walk, morning hang out) the same and then around 9:30am we headed to the hospital for our 10am cardiology appointment.

We said Hi to Nick at the Ambassadors desk, saw Gail from the Gift shop on our way to the elevator, and checked in with Connie at the Cardiology front desk. We checked out the fish in the waiting room and then got called in for our Echo cardiogram (today's tech was Brandon
who turned us on to CoQ10 in the first place). So far so good.

What was not so much fun was Simon screaming his way through an Echo cardiogram for the first time. And, what was great was that Brandon is the fastest tech in the west (isn't it great that since we're in California I can say that).

Shortly thereafter we're waiting in one of the exam rooms for our visit with Dr Rosenfeld. Sara Scott, our outpatient nurse practitioner, found us to go over some insurance crapola regarding a home INR machine (that our insurance wasn't going to be able to cover and would have cost us anywhere from $1500 to $2500 out of pocket plus $146 per month of usage for testing strips) so that we can continue playing with CoQ10 and not have to come in every couple of days to make sure that it's not interacting with his Coumadin.

I was just seeing more and more of our savings chipped away when HunkyPants rolled in. Looking his usual dapper self he launched right into how since our last visit he'd conferred with Rosenthal down at Stanford and they'd looked up studies with Coumadin (the one hated medication that is also used for rat poison and interacts with just about everything except for air). I wasn't surprised that he'd been looking into it (but quite impressed and thrilled) since every visit for the last 6 months at least at some point during our visit we'd have this conversation:

Me: "So we'd really like to start Blah blah blah but we've heard that it interacts with Coumadin"
HP: "Right, well let me look into that but in the meantime I think we should probably keep Simon on it."

Me: "Ok, but we'd really like to work on getting him off it."

HP: "Ok, but for now let's keep him on it."

I would say we had that conversation no less than three times.

Right off the bat, he says that between Simon's function improving and his conversation with Rosenthal, we can just stop the Coumadin.

Wait a minute...hold it. Back up...Simon's function?

It looks like while not a big jump, Simon's function has crossed over into that realm that allows us to play with his medications. in discontinue Coumadin!!! That means more Rat poison for the Rats (sorry rats).

Simon's shortening fraction is now in the 20-22% range and his ejection fraction is now approximately 40%. In looking over our notes we think that when Simon was at his worst that first morning in the hospital his ejection fraction was 9%.

That is incredible. His little/big heart is doing it's thing.

We've gotten rid of the Coumadin, started a new regiment of baby aspirin and have retracted Simon's DNR at the hospital. Holy Crap Dude!!!

Oh yeah, and NO BLOOD DRAW this visit.

What a great day.

Monday, August 17, 2009

Giggle before the storm

Locations of visitors to this page

Just had to share this with y'all since a) it's hysterical and b) we have a rough week ahead of us with a cardiology appointment tomorrow and a pediatrician appointment on Thursday.

Water sports with Simon and his Auntie Dre.

Besides that it's been a nice week since I last wrote. Simon has been playing with drinking more and we seem to be back to a regular nap and nigh time schedule.

We're a couple of weeks into Homeopathy and just a few days into trying another supplement CoQ10. Unlikely we'll see anything drastically different from these two things on this upcoming echo cardiogram but like I've said before, i can't help but be engulfed with hope right before a visit.

Simon still doesn't seem to have any separation anxiety but is now showing some sign of stranger anxiety (really more like shyness) and some delightful new antics at bedtime including wiggling like a fresh caught salmon and a clear "i'm mad" new scream. It's relatively short lived but still...I can't help but wonder how I might be handling it differently if Simon didn't have Cardiomyopathy and I didn't have the image of that heart monitor from the ICU playing in my head.

Not so much whether or not I'd be more or less inclined to let him cry it out a little longer but more simply, my own reaction to it. I hate it in a way that is clearly born out of having a sick child. I feel it like a live wire has just been turned on in my body. I can't tease out what's a normal new mom response or a Mom of Simon who's a little different. Since I've never been either before that quandry will not be answered. I just know that I've never felt anything like it and it's hard to reconcile it with the slow moving, take a breath or three, type of *Ferdinand* that I've always felt myself to be.

You get extra points for knowing the Ferdinand reference :-)

Simon is still a love and a half.

Cross your fingers for no blood draw tomorrow...

Simon doing his best Cindy Crawford impersonation complete with mole on lip

"What choo talkin' about Momma?!"

"Chocolate covered pretzels for dinner totally works for me!"


"What I can't hear you?! I have a chocolate covered pretzel in my ear."

"Topped off with whipped cream?! I am soooo learning to eat!"