The High Cost of a Heart Kid

It's 3am and I am awake. Luna woke for a rare middle of the night milk nightcap and instead of changing her diaper and filling her bottle and then slipping right back into the dream where I left off, I lay awake thinking about...medical bills.

When the Architect and I first learned of Luna's condition, when I was 20 weeks pregnant, the first thing he blurted out was, "we can't afford this!" Or maybe it was, "this will kill us financially". Either way, I winced at his brashness, but deep down inside I knew what he was thinking. We had just finished watching Michael Moore's SICKO and the Architect was terrified. The movie depicted an older couple, both man and woman had suffered cancers. They regained their health, but lost the roof over their head to medical bills.

Now that Luna is 16 months, the reality of having a special medical needs child is sinking in. For the first year of her life, we geared up emotionally to get her through her two heart surgeries and two catheters, and countless testing, shots and doctors visits in between.

Modern medical science of today is amazing. Luna lives a normal toddler life.

But it's the insurance issues (the Architect and I simply refer to it as the Insurance BS) that haunts you and hangs over you for as long as the mind can imagine.

It's not that we don't have health insurance. We do. We have Anthem, and our policy is a HSA. Basically, once we hit a five thousand out of pocket, Anthem pays 100% of all medical bills.

Ha-ha, not so fast.

Most Americans I know have had a good round or two of back and forth over a erroneous medical bill. It's pretty much the status-quo. It's part of the system. Confusing consumers of what has been paid, and what is owed. Usually there is some bogus code that is attached to all of this.... "but what does A9067BS refer to on my bill?? my child did not have a cat scan on March 13th, it was an echo cardiogram!?"

This year alone Luna has cost Anthem nearly 80K. We diligently pay, or the Architect, through his work, pays the out of pocket $800/month for the policy. We then are responsible for the 5K out of pocket, above and beyond the monthly premium, which we have also paid back in February. The Architect's place of work contributes 25% to the policy and then $1500 to the HSA account. And I should note, and this is just an observation; but our insurance went up substantially the year after Luna was born. The Architect's place of vocation couldn't afford the HMO policies for its employees. My guess our family and the family with the child with Leukemia blew the 2009 premiums right out of the water. The pool was too small to sustain the risk. Perhaps I sound bitter, but business terms like 'risk and profit pool' should not be used when referring to children with cancer and serious heart issues. But naturally we can't blame any place of employment for seeking out the least expensive insurance for their employees.

But Anthem doesn't stop there. Every week we are bombarded by medical statements. An HSA statement arrives stating what Anthem has paid out and what we have paid out. Often two statements will arrive in one envelope, stating two different things. The Architect and I pass the statement back and forth, each trying to decode the convoluted bills.

The last series of statement to land in our mailbox have been surprisingly consistent. For Luna's last catheter, we are responsible for $6700.

Did I mention already that we hit our out of pocket max of $5000 and we pay $800 a month for the policy? We fulfilled our end of the bargain, now its Anthem's turn.

So, the games begin. And actually have been for a while. Behind me, on the window is a stack of bills. Smaller bills in comparison, one for $72 another for $616, both bills from the hospitals themselves. Various balances that through "code error" (read complete BS and a practice I have since learned from industry insiders that is used often to confuse consumers), and more importantly, neither are for services that Luna actually endured. They are, in short, bogus claims that we're now responsible for. (and as of this reading, I returned home today, before publishing post to find the $616 bill has gone into collections-this is for a cat scan, a procedure that Luna did not in fact receive!)

I've given up making phone calls as its only an exercise in tail chasing consisting of hours and hours of wasted time, where everyone will be pulled in the mix, including Luna's two cardiologists and the catheter doctor, trying to decipher what a certain charge is for. Rounds of emails and phone calls will be made; to the hospital to Anthem, to the doctors themselves. Each time you're convinced that you've finally made some head way and you won't see the bill again. And then each month the same bill, arrives in the mail.

I think to myself we simply won't pay the $6700. But then worry come January of 2010 will our family have health coverage.

Meanwhile the media buzz has been all about Obama's healthcare reform. Tonight he held a press conference on the very topic. I receive endless tweets to share my story, but wonder where to begin. The opponents views bubble-up through social media in vicious statements and articles to block universal healthcare and I'm reminded of the bumper sticker, Republicans solution to the healthcare crisis: don't get sick! I can't bring myself to even follow what's going on. It's too close to home. All I know is health care is one scary mess.

Summer At Last

Summer finally decided to make an appearance here in New England. According to Sam Champion, the weather anchor on Good Morning America, Boston only saw 3 sunny days from May 1 through July 3rd. This is what our little city looked like in June. Not pretty. June, arguably the best month of the year, was replaced by March, a toss-up month, and one that occasionally can give you sunny skies with small bursts of spring, but more typically will rain, rain, and rain. The latter part of the month, when we did not see even a hint of sun for nearly 3 straight weeks, was the most difficult. Our house, with six large skylights and a footprint of not much more than 1100 sq feet illuminates even on the darkest winter day. But with the rain, sometimes a mere drizzle, and other times a driving persistent stream; the sky lights mocked us. Not for a minute, while we all hunkered down inside could you forget the weather outside. At one particular moment a cloud seemed to disintegrate just over our roof, dumping rain so hard onto the glass I worried about leakage. Sienna immediately burst into tears and plugged her ears, pleading with me to make it go away.

The mind can play tricks on you when you don't see the sun for 20 straight days. Some mornings we would wake to light grey skies and Sienna would remark, "Oh, it's sunny today!" It broke my heart, but then again, I too was beginning to forget what morning, noon and evening looked like. It was varying degrees of grey, every hour of every day, and as a result the girls bed time seemed to get pushed back later and later.

I wondered to myself how we could so successfully repair broken hearts and faulty arteries, yet there was no solution whatsoever to stopping rain.

During our unwelcome, and unusual rainy season, moods sank and completions ran sallow. Sienna worried me with her greenish complexion and dark circles under her eyes, and Luna's lips seemed a permanent shade of purple. (interestingly, Luna's lips will turn blue-ish purple in rainy, cool weather, yet when I check her sats I always get the same high 80's that I've been seeing with her all along).

Finally, just around the 4th of July, the stubborn 'low-pressure' system (a term that can now instill fear and loathing in many of us) pushed out to sea and we were greeted with sun and crisp-for-July air.

Sienna, my sensitive child, still seems off from the rain. At nearly 3 1/2, an age of unfettered energy, she complains a lot of being tired and I wonder if her vitamin D levels have depleted. Luna of course, in typical Luna fashion, never seemed the least bit fazed by the weather. Each morning we awoke to rain I would search in her for signs of discontent, but she gave me nothing. She continued right along with toddlerdom, practicing over and over getting in and out of Sienna's big-girl chair, and testing the limits of her new vertical status by creeping around and around the coffee table.

Finally, smack in the middle of July, life feels familiarly summer-ish again. In a few hours the house will be awake and bustling, and I'll run around grabbing towels, snacks and bathing suits for swim lessons.




Proud Luna with rain-induced purple lips.




The girls find ways to amuse themselves while trapped indoors.