Wednesday, February 10, 2010


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I'm normal.

(or at least 'normal-ish' according to my dear old friend Maia).

But let me go back and begin chronologically.

It's Friday morning and I head into the Cardiac Unit at Alta Bates for my very first Echocardiogram or ECG as I'll be referring to it from now on.

It's not really my first ECG since I've been through several dozen with Simon but it's the first one performed on me.

I didn't realize it, but in the days leading up to it I was starting to feel like this was in fact a very big deal, and maybe I should be spending a little time with myself and my feelings to work it out.

Laura time-Introspection- Focus on Self/Care: All things I've been stellar at in the last year.

The middle one maybe, but the first and last, I say I get a D-

The amazing thing was that I had my Mommy with me. She even came into the room with me and chatted up the ECG tech. I can't tell you all how amazing it was to have my mom here for the last week. To have someone focus on me the way that I focus on Simon.....priceless. That she held me down the same way that I have to hold Simon down...I thought that was a little much....Just kidding.

What was so amazing was that I could actually see a difference right off the bat, with my untrained, non-medicalized eye. My valve moves differently that Simon's. Mine is more like one of those doors that you might see on a traditional Berkeley craftsmen house swinging wide, almost 90 degrees with every pump. Simon's is more like a hotel room door with the chain attached so you can see who's knocking. Not quite that bad but close.

It was very intense to see.

I also learned that my ejection fraction is 62 where Simon's is 45. Mine is right in the middle of the normal range of 55-70. The tech was impressed that his was 45 and I took that wholeheartedly as a wonderful objective observation from someone that's seen a lot of hearts.

So while I wasn't getting the official "your heart is fine" from my doc I was at least comforted that I wasn't showing any obvious signs of Cardiomyopathy.

Today I got that confirmation. A sweet typed letter from my doctor that lists all the possible tests results one can possibly have. There were spots for Anemia, white blood cell count, lipids, thyroid level, glucose, kidney, liver function, prostate cancer marker, and a couple of lines left blank for OTHER.

That's where in small handwritten unreadable doctor script, was my procedure- "Echo" - and my very own (and possible first time ever applied to me) personal results " : Normal"

That's me right? Riiiight.

Gotta love it.

Shortly after my Echo, we picked up my sister from the airport, mother and daughters shared a delish lunch from my favorite Vietnamese restaurant and by 4:00, Jen and I were on the road for my weekend away.

I have to say I think that I did a great job. I only called home 2x a day and I cried only once...which leads me to my next story.

It's Saturday morning. Jen and I have had a yummy breakfast at our lovely resort up in the Russian River area. I'm just starting to feel present and even looking forward to my massage that my sister has scheduled for us.

We walk into the room, meet our massage therapists, get changed/naked and lie down on the tables. Immediately I feel my chest tighten and the tears start.

Who am I to be here and getting a massage? Why do I deserve to be here and be sooo taken care of? My son is at home with heart failure and tube feedings and I'm getting a massage?! This is too much.

We introduce ourselves and mention where we are each from. Jen from L.A. and me from Oakland.

I let my massage therapist know that it's my first time away from my 22 month old son.

(I'm going to write in conversation mode because I remember it word for word)

She says she understands because her oldest just "flew the coop."

Me: "Simon's a special boy, he's got a heart condition."

She: "Oh I'm sorry, I understand. My youngest has a serious chronic illness"

I might cry" I say, already there

Jen: "It's ok Laura, just be here."

Me: Deep breath, some good sobbing, and we get started.

Less than 10 seconds later she says "Do you go to Oakland Children's Hospital?"

"Yup," I say already wondering where this is going.

She: "We went there a couple of times..oh, we had the most good looking Dr. What was his name? We used to call him Dr Easy-on-the-eyes. What was his name?"

Me: "You're not talking about Dr. Rosenfeld are you?"

She: "Yes! That's him!"

Me: "Oh my fucking god. That's Simon's Cardiologist. We call him Dr. HunkyPants."

We went on to talk about him and how soap opera good looking he is (see August 6th 2008 entry) and then talked about our kids and the whole 'parenting plus' experience. It was amazing. Here I was, on my weekend away, at a mostly empty resort in Guerneville CA, and my massage therapist and I have the same pediatric cardiologist for our kids and not only that, we have very similar nicknames for him.

It was just perfect. It was just what I needed to relax and get one of the best massages of my life. I didn't have to pretend anything. I didn't have to tamp any parts of myself down. I didn't have to feel alone in that moment. (I know my sister and another massage therapist were in the room but still...). It was amazing. Jen said it was amazing how surrounded by Angels I am and it's true. There are incredible gifts to be found everywhere. Thank you Krissi.

We ended up having a fabulous rest of the weekend complete with a bad movie, a great walk in the redwoods, fun outlet mall shopping, and splendid sweet sweet time with my sister (with whom I haven't had that much time alone with in ten years- Thank you Fenny Jitch)

It was great to have had such delightful weekend because Monday was one of Simon's Cardiology visits and I was not looking forward to this one as it included his dreaded Echo plus the ever enjoyable blood draw. No matter how much I try and normalize the visit, the days leading up to it I feel my muscles tighten and the weight of everything settle deep into my core.

Will this be the one? Will it be the one where there's big change? Will his heart have gotten better? Will it have gotten worse? Will his tests come back with some anomaly or some cause for great concern? It's been so long since his last visit, what if something has changed and it's serious? Would they admit us right away even though he doesn't seem that different? Has he gained any weight? How much? Is it too little? What's his left ventricle looking like?

And on and on. I can't help it. It's a three to four hour event and it carries with it such weight, not to mention the holding down of my son accompanied by the screaming that is inevitable (for at least another several years with the blood draws- they say with the 'no owie' Echo, getting to three is the magical number).

We managed to get through the Echo with just a hair less struggle. I frikkin' love the Teletubbies and portable DVD players, and then we headed into the exam room to wait for Dr Easy-on-the-eyes.................I mean HunkyPants.................I mean Rosenfeld.

Three things. One neutral (or relatively positive), one delightful, and one terrifying and great all at the same time.

One Neutral- There is no change in his function (Shortening Fraction 20 Ejection Fraction 45)which I guess is better than the other option. I still always hold out for that big jump but we're 6 months now with no change. I wonder if Simon's plateaued. I'll keep holding out for the jumping.

One Delightful- Rosenfeld said that he didn’t need a blood draw this visit unless of course I wanted to know the BNP. It took me about one one hundredth of a second to say no thank you- sorry Liz.

And last but certainly not least

One Terrifying and Amazing- We are now extending our visits from every two months to every three months.

This is both amazing and frightening right?

I’m so very glad to have the longer break between Echo’s, blood draws, and the long-ass appointments that seem to fill up the entire day. I can trust that Rosenfeld knows how well Simon is doing in ways that I don’t, and of course it’s terrifying to think that Simon’s going to go three months without an echo or seeing a cardiologically trained individual (besides myself that is- I think I made up a new word there J).

I remember when we went from 1 week appointments to 2 week appointments and I thought I would faint.

Of course as we were arriving for our appointment I heard HunkyPants say goodbye to another one of his patients with a “See you in a year” and I thought “Gosh, someday I hope that’s us”

Such a roller coaster ride.

Sometimes I feel like I’m riding in the first car, other times the middle, and occasionally the rear.

In that first car I can sometimes see what’s coming and it’s exciting (Getting those better #’s, clear improvements, discharge days, finally hitting some milestones, Simon's laughter).

In the middle car I’m keepin’ on to keep on. (Making sure the meds are reordered on time, keeping appointments straight, doing regular daily activities, tube feedings, meds, Purell).

And then there’s that last car where the ride just feels more intense. Every whip turn, every drop, the very slow climbs, feeling like the floor just fell out from underneath you and you can’t catch your breath.

We haven’t been in that last car for a while now and I’m so grateful. Of course I always feel like I’m aware that last car is still there and attached.

Quite a ride.

All in all a good visit.

We're getting back into a regular schedule with swimming and schooling and walking. Did I not mention that the little man is WALKING!! That's right. Mostly with his crocodile walker (for entire city block) but we're seeing more and more solo steppin'. Twice now he's walked from our front door up to the front lawn holding my two (sometimes just one) hand.

Go Little Man Go!

Some photos from Auntie Joan's B-day dinner.

Simon enjoying drinks at Auntie Joan's B-day Dinner

"What do you mean I'm cut off? What kind of joint is this?"

"Wait, I'm serious. Really, I'd like another drink. I'll behave."

"It's ok. It was just water. Now can I have another drink?"