Wednesday, December 29, 2010

Visions of Sugar Plums with PBDEs Dancing in My Head

If you’re like me, every year at Christmas you receive a pair of pajamas. This year The Architect gave me a lovely pair of ‘Simply Vera’ flannel pajamas that are super soft and cozy.

My children typically receive new pairs from their Memere at Christmastime.

Receiving nightgowns should be one of those easy things in life. You open them up, feel them, hug them, hold them, then carefully you put them back into the box until they are worn.

For me this ritual is a painful one.

Each year I tell my extended family very kindly that they don’t have to bother getting the girls’ pajamas. That its one of those things that I like to pick out myself. In this day and age you generally can get away with sounding like a neurotic parent on just about anything; especially when it comes to your beloved kids. Say for example candy treats. With peanut allergies at an all-time high, actually with allergies to anything at an all time high, it’s easy to say, “Oh little William can’t wear wool..., eat chocolate..., is on a gluten-free diet..., can’t be over stimulated with toys that relentlessly flicker..., etc, etc”.

But pajamas? What kind of freak says, “oh, don’t worry about getting my kids PJs…they require special sleepwear, and it’s too much of a bother to explain what they can wear.”

As I said this to my in-laws last year I could see their eyes glaze over.

I even have my older daughter, who will be five in February, convinced of the evils of a nightgown. In Wal-Mart not too long ago, we braced ourselves to do some quick shopping for cleaning supplies (Mrs. Meyer’s). As I whisked my kids past the children’s clothing department, my pre-Ker loudly announced, while standing at a rack of limply hung Tinker Bell nightgowns, “MAMA, THESE ARE THE PAJAMAS THAT ARE BAD FOR YOU, RIIIIIGGHHHHT?”

I laughed nervously and pulled the precocious child along with me, trying to ignore the glares and stares of my fellow shoppers around me. In this country you can get decked for telling someone not to eat a Big Mac. I sure wasn’t going to get into telling anyone around me why they shouldn’t wear a very innocent and happy-looking Dora nighty.

So, you can imagine now how on Christmas Day when my kids’ opened two matching Dora nightgowns why I spiraled into a panic attack. The girls cooed, and grabbed their new sleepwear immediately, while I checked the label, knowing exactly what I would see: THIS GARMENT IS FLAME RESISTANT.

I won’t bore you on the evils of fire resistant chemicals that are now found in everything from carpets, to sofas, to mattresses, to car seats and infant’s feety pajamas. But if you’re interested you can check here, here, here or here.

(I once heard on the radio the reason why we have so much pesticide and chemical additives in our modern life is because these concoctions were developed for WWII weaponry and after the war ended, manufacturers needed a new market.)

But don’t read all that. Then you will become tortured like me, and find yourself pillaging through clothes, bedding and furniture…desperately looking for these words: FLAME RESISTANT.

Tuesday, November 30, 2010

Six Months after Luna’s Fontan

Yesterday was one of those super-charged days; one of those days where everything seems to happen at once. Mine started with the news of Leslie Nielsen’s death. I’ve watched Airplane at least a dozen times. Learning of someone’s passing; even a celebrity who you have no personal connection to, just gives you that “feeling”. After lingering on twitter too long, I scrambled to get the girls out the door by 8am so we could make it in time for Luna’s 8:45am post-Fontan check-up. En-route to the doctors while the girls sang in unison, “My mother is a baker, a baker, a baker…” I watched a woman cross the street-in a crosswalk-where she nearly got killed by a driver who was texting.

But onto the appointment:

Luna and her favorite dolly sat very patiently and still for the entire 45 minutes echocardiogram (btw, don’t ever criticize this dolly’s hair-which consists of just a few blonde shoots stemming off the top of her head-Luna gets very upset).

After the echo, we moved to the examining room where Luna had an EGK, her blood pressure taken, and a sat check (blood saturation levels). All checked out perfectly.

Then she hopped on the scale, where the digital numbers read an even 28 lbs.

Dr. G even got to try out her snazzy new stethoscope. The ages-old medical instrument has recently been adapted to the 21st century, where now you can record the patient’s heart while you listen. This is pretty amazing stuff. The recording is then imported into the computer where you can track, map, and illustrate a patient’s heart beat. The coolest part is when Luna is twenty, her doctor’s can go back and actually listen to what her heart sounded like when she was two. Hooray for cutting edge medical technology.

We then assessed Luna’s medication, which consists of just half a baby aspirin, and determined she’ll stay where she is. Patients are advised to take the entire tablet when they weigh 35 lbs, so we still have a year or so before we increase it. Otherwise, the appointment was quick and uneventful. Her next scheduled appointment is not until (insert long and extended drum roll please) ... MAY 2011.

Upon my arrival home, I settled back into The Monday After Thanksgiving barrage of emails, and learned that a fellow CHD’er, Steve, who also had a single ventricle, died in the early hours of the morning. What’s stranger is he is thought to have passed on the 66th anniversary of the invention of the Blalock-Thomas Shunt; an operation which paved the way for the survival of all single ventricle heart patients. This of course includes Luna.

Some days it seems that the universe wants to show you how valuable and special life is; and also how fleeting it can be. Yesterday was one of those days.

Friday, September 24, 2010

How has it been two years already?

Today marks the two year anniversary since Luna had her second open heart surgery: The Glenn. I have been thinking about this date all month, but I didn’t think that it would hit me the way it has. For instance, Luna’s birthday doesn’t conjure up any sentimental feelings, other than the normal, “I can’t believe my kid is going to be three this year.” And two days after her birthday, March 13th, which marks the date of her first surgery really does nothing for me either. I’m fairly certain when that date passed last year I was oblivious to its meaning.

But for some reason today, September 24th has been hanging on me like a heavy coat. The number ‘24’ will always stick in my head. When Luna’s surgeons were deciding when her second surgery would be, they chose the 24th-partly because Luna would be a full six months-a good place to be age-wise for the operation, and partly due to sheer logistics. My friend Sarah at the time said with complete conviction: “24 is my favorite number, everything is going to be OK.”

And she was right.

Hard to believe that was then, this is now. Her last surgery, the Fontan was end of May-right during Memorial Day weekend. I wonder if I’ll have the same feelings as I do today during next year’s unofficial passage into summer. The vague, contradictory, and all consuming thoughts of:

We’re blessed.
Why us?
That was really tough.
That was already so long ago.
What was I really feeling then?

For now, and very likely forever; open heart surgeries are a thing of Luna’s past. She is just like every other kid now. Regular check-ups, dental appointments, shots, and the occasional virus is what her life is about now. Luna is a spunky, tough, sweet, stubborn, and mischievous little two-and-a-half year old now. And really, who would want it any other way?

Last weekend Luna decides to take off her skirt, her shoes and her fairy wings so she can roll down a nearby hill. (Portsmouth, NH Fairy House Tour).

Wednesday, June 30, 2010

A Simple Thank You

Luna clutching her daddy on a recent camping trip in the White Mountains.

Now that the big stuff is behind us, it feels like a natural time to pause for a moment. My friend Mindi remarked in an email recently that we'll look back at this time "with amazement at the difficulties and the victories".

Indeed we will. Sometimes all of it seems like a movie. A very long movie, and one that held our attention captive for the past two years. Finally, the drama is over, and like walking out of a dark theater on a sunny day, the light is blinding. Our eyes are adjusting. Slowly the world around us is coming into focus.

I think for me, perhaps the most special memory, will be that of all the generosity poured our way. It was, and continues to be remarkable. Back in March, I wrote this blog post which illustrated the beginning of our journey through a fundraiser spearheaded by Marlow Rahn, a fellow Seacoast Mothers Association member. Like anything, it took just one person to reach out, and from there, others joined in. The fundraiser raised over $11,000. But the giving didn't stop there. Luna's school waived June tuition for our heart warrior, even though she miraculously only missed the first two weeks. (and honestly, she could have gone back after the first week, the only concern was that one of her classmates would knock her down, and subsequently bruise her healing chest).

Outside of the fundraiser, family, friends and complete strangers shared zoo passes, baseball tickets and cooked and delivered home cooked meals to our door. And of course, not looking over perhaps the biggest gift one can give, that being time. And loads of the precious commodity was put aside to help Luna.

To all of you, we thank you.

Paul, Sabrina, Sienna & Luna

Monday, June 21, 2010

Summer Fun (without getting a chest scar wet)

Yesterday was my favorite type of day; hazy, hot and humid. Not up for battling the beach traffic, I racked my brain for something we could do with the girls in the yard that involved cool water. For a brief moment, I thought of pulling out the Slip 'N Slide, until I remembered that to use the classic lawn slide, Luna would have to slam down on her chest and slide down a wet, plastic sheath; and risk submerging her scar in an inch of water. So, that was out.

Post-open heart surgery, it is recommended that the patient doesn't swim for five weeks or participate in contact sports for eight. Swimming is off limits because you don't want to run the risk of the scar-which in Luna's case is maybe 6 inches or so-getting so saturated that it breaks open. Contact sports must be avoided because naturally a blow to the chest, after a major surgery in which the heart is moved and hardware is inserted into the body, just isn't a good idea.

Luckily The Architect had already considered these things and pulled out a fancy sprinkler and water guns for the girls. The sprinkler was purchased at Target for $10 and the squirters were four for a buck at the dollar store.

As you can see, a lot of fun was had for just $11!

Friday, June 11, 2010

Two weeks Ago Today (Fontan)

It's hard to believe it's been two weeks already since Luna's Fontan operation. It already seems like a life time ago. The feeling is not unlike carrying around a heavy and impressive tome, and one you may not always be up for reading, but must do so, in order to move on to the next phase of life. We've just finished the last chapter. We feel collectively lighter as we put the book away on the family bookcase, where it will sit, hopefully for years, before we'll need to make amendments. Luna's Fontan, the last of her three open heart surgeries to correct her circulatory system, was completed two weeks ago. Her follow-up visit to cardiologist was all smiles. Her team was beaming as soon as they read her echocardiogram. And her sats? Pretty darn close to mine at 95. I'm telling you, this kid is magic.

I thought it would be fun to show photos depicting her speedy recovery.


The Big Step Down. Regulars at hospitals like ourselves love this phrase. It's the first step towards breaking loose. Big sister Sienna benefited the most from this transition.

Time for Pet Therapy! A visit from Copley both excites and soothes the young patients.

Hospital bed mates get dressed for the big occasion. (Shhh, don't tell Sienna she's not a patient).

These next two photos are from the Portsmouth Chowder Fest, and were taken just one week after Luna's surgery. One week! She was on the heart and lung machine just one week prior!

I highly recommend taking the recipient of a major operation straight to the salon upon returning home from the hospital. And adding pink to the recent patients hair is always a good thing too for making one feel glamorous again.

On Wednesday Luna wore her Sunday best for her big sister's end of school year Tea Party. Isn't she lucky to have such tiny and dainty feet?!

Saturday, June 5, 2010

Right Back at It. (Insurance again)

I don’t want to spend my time blogging about this. I much rather spread the message of hope to others about Luna's speedy recovery from the Fontan. But once again The Health Insurance Company has hijacked our time, money and good spirits.

So here I am, blogging in attempt to get the corrupt ways out to the masses. One, because I need to document the sheer hell that Insurance Corp puts us through, and two, I dream of testifying against all of the Big-wigs at the Insurance Companies on the floor of congress one day. I will do my small part to change the way American runs its health insurance program. In my dreams, patients who were denied treatments from their insurance carrier, who as a result died, like this little girl here, will at least not die in vein. In this country, even an accidental death can result in second degree murder. So, why should these Health Insurance Companies, who very concertedly deny coverage to people (kids, even!), be shielded from serving a term for nothing short of murder?

So, you’re not going to believe this. Here goes the latest round with Big Insurance.

While I was in the hospital with Luna-getting her through her third and hopefully last open heart surgery, The Architect called to say there are insurance problems again.

Can we just stop right here. Let me repeat: a mother in the hospital with her two-year-old, trying to get her girl through surgery, and I have Insurance issues to worry about.

Ok, moving on.

The Architect went on to explain that the latest statements had two erroneous charges on them. The total out of pocket charges on the statements? Nearly $14,000. But for now, we’ll focus on just one of them.

One charge was for $4065, in which The Insurance company states I am the consumer, and apparently on 4/14/10 I had some type of service done at UMass Memorial Health center.

That’s funny. I’ve never even been to the place. And on that date I was with photographer Greg West touring the Boston Residential Design & Contruction Show.

This is where it get’s stranger than fiction.

Paul, aka, The Architect decides to call my primary care physicians to try to make some sense of the claim.

The receptionist, a young man took Paul’s call: and explained that he too has (insert big Insurance Provider here) and got a statement with the same exact charge, also from UMass Memorial Health center.

Can’t make this stuff up folks.

Nick, the receptionist explained that when he called to contest the charges, Big Insurance responded saying, “Oh, we know what happened, there is another man with your name and same birthday, that must be it”.

Well, guess what? With this little invention called the internet, it’s pretty easy to look up to see who has your name. There is no other Nick (insert unusual last name here), with his exact birthday; month, day and year.

And that really doesn’t explain why I got the same charges. Does Big Insurance want to tell me that there is another Sabrina Velandry out there?

Nick, works in health, and his parent company, concerned and bothered by the claim, and the Insurance Company's rebuttal to it, has taken up to investigating the case. I faxed over my statement, which will be part of this investigation.

When I called Big Insurance, the woman I spoke with Beth K. actually said to me: “well, this is not the fault of (Insert name of Big Insurance carrier here)”.

Let’s just stop here to reflect upon the dysfunctional culture of the entire company. First, can you think of another company where employees do not release their last names? Tells ya something, doesn’t it. Secondly, if this was your company, and you were alerted to such an error, would you not make it priority to stop whatever fraudulent behavior was stemming from your corporation?

Stay tuned folks; something tells me this is just the tip of the iceberg.

Tuesday, June 1, 2010

Fontan Day Five (Big Sister, Big Sister)

I can’t complain. Really, I can’t. It’s Tuesday, we’ve only been here since Friday. And we were here last Thursday for pre-op, so I guess that counts for half a day. But, it’s still tedious. We’ve folded into a new month. June First today. And we missed Memorial Day weekend. It’s missing these types of landmarks that mess with you later. You feel gypped, off kilter, and find yourself later in the summer trying to recall what you did for unofficial kick-off of summer, and for the briefest of moments you actually forget, only to be disappointed when you regain your conscious footing.

On Luna:

She’s doing great. Chest tubes are out. X-Rays looking good. She does have low potassium levels, but with some regular eating we should be able to get those back up. She’s down to just one IV-in her hand. (Careless Mommy of the Year Award goes to me for accidentally pulling out Luna's IV while I was lying in bed with her. I looked down to see blood pooling in her blanket and on my shirt. Luna was sort of whimpering, and I started gasping and the nurse, thanks goodness, sprung into action and cleaned-up the mess.)

Her heart rate seems back on track too. No mysterious rhythms. And her blood-oxygen saturation levels off the vent are in the low 90’s. But really, they had been there before, but the big difference now is in her toes. Almost immediately after surgery her feet took on a healthy glow. Whereas before Luna thought she was wearing blue nail polish on her toes, now she’s sporting a nice nude look.

Perhaps the best thing to come from our extended hospital stay, is how our four-year-old is handling all this. The logistics of getting your child through three cardiac catheters and three open heart surgeries is one of the most difficult things to manage. What to do with our other child, commitments, and careers while we all hyper-focus on our youngest very noisy medical needs?

Our first born, Sienna, is a sensitive soul. No sooner had she mastered speaking when the child started spouting off a steady stream of conscious chatter; often having to do with the trees breathing in too much exhaust, the animals left out in the cold, or the flowers not getting enough, or getting too much rain. So, Luna's medical condition has always been something of a hotspot with her. Or so I had thought. In Sienna's four-year old brain, Luna’s heart is “on the outside”.

Thus, the thought of bringing Sienna into the hospital; where even the most seasoned parent can crumble at the sight of some of the patients-was simply nerve racking for me.

But Sienna did great. On the way in, The Architect prepped our precocious four-year-old; “You’re going to see little boys and girls who are sick and look different, but like Luna, they’re all here to get better”.


And indeed, Sienna was as cool as a cucumber. I caught her wince just slightly at Luna’s tubing protruding like a plastic octopus from her chest. But otherwise Sienna was unfazed.

Later I brought her down to the food court where we hit the collective lunch break enjoyed by the staff of the several hospitals right in the area. This seemed to bother Sienna more than anything.

“Mommy, all the doctors and nurses left the babies alone in the ICU!”

Later, back in the ward, I thought I would try to capitalize on all this good-feeling toward the hospital, so I asked the four-year-old “do you think you want to be a doctor or nurse when you grow up?”

“No, Sienna responded, “I want to be a fire woman so I can put out all those forest fires and save the animals from burning.”

Sunday, May 30, 2010

Fontan Day 3 (Boredom sets in)

We’re officially over the hump of the Fontan surgery. Luna is recovering nicely-actually she’s ahead of schedule. The only thing we have hanging over our head is this little pacemaker issue. During surgery, as soon as she was settled into her to anesthesiac sleep, her heart beat went into a junctional rhythm. Basically this means the heart fires its beat off from different parts of the organ, when it should come from the atrium. In people with two ventricles this is no biggie. But with one ventricle, there are no liberties; the single ventricle people get put on a pacemaker-and fast. For now, however, Luna’s heart has settled back into a normal rhythm-which is a good thing.

Oh, and did I mention her surgeon now thinks she has a left ventricle? For the last year, she was determined to have a right one, but she’s switched teams again, this time playing for the left.

Now it’s boredom. And tedium. The most exciting thing to happen around here is shift change-which happens at 7am and then again at 7pm (these nurses really deserve a special place in heaven…seriously…they’re like angels on earth).

But boredom is much better than the nightmare we experienced the first night, just after Luna’s surgery. They always tell you after everything is OK, just how bad it got for a while. “Rocky” is the word her doctor’s use for her somewhat exorcist-like behavior just after surgery. No fewer than twelve doctors were in the room-several giving a running commentary on what medicines to add, what to pull. All the while Luna cried, bucked, reached, and grabbed for me; even under all those sedatives and while attached to a net of lines; giving the impression of a small whale fighting to escape a messy trap. Witnessing her powerful spirit and will to live was nothing short of incredible.

So, I leave you with some photos. As you can see Luna is uncomfortable, and bored. And she hasn’t moved since 7:30 Friday morning. And she has IVs in her feet (her wrist wasn’t having it), so she can’t walk now even if she wanted. But next week at this time, (knock a big ole piece of wood), she’ll be home, or maybe even on the playground with her sister.

Friday, May 28, 2010

And so it begins. (Fontan)

Luna looking like a day at the beach the day after her surgery.

Yesterday Luna had her Fontan surgery. We had just been here about a month ago. The Architect and I once again rose at pre-dawn and precariously lifted Luna out of her crib and gently slid her into her car seat for our drive into Boston. We know the routine now. First it’s to Admitting for a 6 am arrival where Luna gets basic vitals taken and NPO status (when did she last eat solids, milk and clear liquids). From Admitting families are taken back to the pre-surgical holding areas. Tight spaces with beds and TVs and two chairs, separated by curtains fashioned from cheap fabric in geometric patterns.

The holding areas are a surreal experience. It’s there you wait for your child to be taken from you, so in our case, they can perform a six hour open heart surgery-in which they will move your child's heart (this detail haunts me, if I keep bringing it up, it’s because I want to desensitize the thought-like how one does from repeating any word fifty times over so it becomes meaningless, almost silly sounding). But luckily The Architect and I were kept busy simply trying to distract Luna from her grumbling tummy, so we had more immediate issues at hand.

After a short wait, anesthesiology came in and administered Katemine-also known for its street name of Special K-to the kids including, of course, Luna. The idea behind giving this powerful narcotic is to make it easier for the kids (and the parents) when it’s time for the doctors to take the child back to the OR. All the children in the holding area, and The Architect whose job it is to compute such things, estimated there were about 20 beds, which meant there must the same number of ORs-were given the happy juice. Within five minutes the mood changed drastically, the holding area was aflutter with children laughing and snorting, and for a moment you could almost pretend you were in a matinee watching Shrek. Luna reacted no differently. Within five minutes of swallowing the vial, Martha Speaks suddenly became the most hilarious thing the child has ever seen.

Once Luna was good and loopy, the anesthesiologists brought her back. She protested a bit, so Paul carried her to a place where she’d get to breathe the "happy strawberry air”. (More trippy drug references, I personally worry about future drug dependence problems for these heart kids than I do about the heart function itself).

The surgery was long-from the time Luna went in to the OR till the time she was wheeled out was about seven hours. Then it took another hour and a half for the team to clean and prep her for the ICU.

When Paul and I arrived in the ICU, she looked like this.

We’ve seen Luna like this so many times, we’re becoming numb. It’s almost like a fear of flying I just kicked for the same reason; the more you do it, the more you become desensitized. Public speaking is exactly the same way. Virtually any fear or phobia, from flying to public speaking to watching your child endure one invasive medical treatment after the other, can be mastered with sheer habit.

So seeing Luna with all the tubing wasn't difficult. It was the drama that unfolded next that was.

Some of you may remember this post I wrote on Luna’s “I do it” nature. Well, even under “enough sedatives to knock an elephant out” (direct quote from her nurse), the little stinker still would not quit. Luna wanted out. With two drainage tubes protruding directly from her heart, a breathing tube jammed down her throat, a catheter, and IVs coming out of each foot, her jugular vein and probably places I didn’t even detect in the tangled mess, the child thrashed and pulled and yanked and heaved to get up from under all her equipment.

Even her surgeon stayed on board to gently hold down her arms.

Finally, Paul and I were asked to leave. My motherly instincts told me it’d be better if she didn’t feel my presence, as all of us moms know, our children behave the worst for us.

Today when we walked in, the storm had passed, and Luna, though still somewhat constrained, dozed in and out in front of Curious George.

Her nurse told me later they had to administer something called a ‘Kamikaze Wean”. This, in short, means Luna got her way; that big ole breathing tube came out real fast last night.

Sunday, May 2, 2010

In for the Fontan and out with Ear Tubes: Part I

Last Thursday had been planned for weeks. Years, really. Luna's last of three surgeries, which we knew she would have to endure from the time she was diagnosed, at just 20 weeks gestation, had been scheduled for 6am. The Architect and I spent the entire week leading up to this All Important Date-and one that justly sends many a heart mommy and daddy to the doctor for a refill on sedatives-calling for referrals, booking hotel accommodations, arranging for our four-year-old to sleep over friends’ houses, and coordinating rides to and from school for the before-mentioned four-year-old.

The afternoon before the surgery was scheduled I called Luna's surgeon. Lu's old surgeon took a position at Columbia, and we were to have a new one. This doctor was assigned to us by Luna's esteemed team. I didn't for a minute doubt his competence, but I thought I should at least speak with him before we handed our two-year-old over for a 5 hour surgery.

I had exactly 25 minutes to talk with him before I had to jet off to pick-up the girls from school. Luckily when I placed the call, his secretary put me right through to him. The Surgeon’s voice was clear and calm. Too nervous to even think, I told him that I didn't know what questions to ask. Thankfully the kind surgeon launched into the details of the procedure. Details that have been haunting me ever since.

I had always loosely understood the Fontan. It's the last of three surgeries most single ventricle kids have in order to correct their circulatory system. It’s all about circulation and pressures in these kids. Keep the single-ventricle heart buoyant and don’t ever over-work it, and they will live long healthy lives. As a way of 'paying it forward' while also paying thanks back to the thousands of others before Luna; I had volunteered our daughter for a research study during her Fontan. The study was to determine if two medicines increased recovery time. The results to be published in the very prestigious medical journal aptly titled: Circulation.

In short, the Fontan is required to get the blood flow down to the lower extremities. As Luna stands now, her legs are getting recycled blood-mostly because of gravity. If you look at her little toes, they are indeed quite blue (and cold). So cyanotic in fact, that she thinks that she fashions blue nail polish on her toes. To which I simply keep pretences up, "yep Lu, Sienna has pink nail polish and you have blue!"

What I didn't realize about the Fontan, is that of the three operations these heart warriors have (the BT Shunt, the Glenn and the Fontan), the last is considered true open heart surgery. With the first two, the chest is opened, and the heart is exposed, but mostly the doctors are rerouting arteries around the heart. In the Fontan a 'baffle'-which is a GoreTex mesh-type piece of material-is affixed to a room of the heart. The synthetic material is then used to create a channel inside the heart, one that connects from the vena cava to the pulmonary artery.

And here's the part that nearly caused me to pass out: in Luna's case this will not be a straight forward Fontan. Because of her dextrocardia, her heart will have to be shifted and rotated to where a 'normal' heart sits in order to gain access to the room of the heart called the atrium. (Funny that word should have a double meaning; one that involves the intricate design of an architect, the other, in the case of Luna, involves a crucial piece of a heart surgeon's intricate design). Luna’s atrium, which is where the baffle will be affixed, is not assessable without moving the heart. Because her heart is rotated in her chest-a near perfect mirror image from yours or mine-this means, in clearer terms: Her Heart Will Be Moved Significantly During Surgery.

I'm weak just writing about it.

So I asked the surgeon the ridiculous: “will her heart be placed back to where it was?”

“Yes,” replied the kind surgeon, “we like for the organs to stay where they were, or where they want to be, which in Luna’s case is rotated, and on the right, and protruding slightly in the right chest wall.”

This is true, Luna’s heart can be felt quite well if you pick her up from under the arms-just under her right arm-a fact that has disorientated some of her care takers.

Then I asked another ridiculous question: “Can her heart move after surgery?"

“No,” The Surgeon replied.

Phew, check that off my list of anxieties.

The Surgeon assured me that with many single ventricles, the heart is often dextro, and has to be moved to gain access to the atrium.

The entire surgery will take up to 5 hours and is broken down into these parts:

1 1/2 hours to get lines and Luna anesthetized and stable for surgery.

1 hour to remove scar tissue from last surgeries.

1 1/2 for actual surgery, during which time Luna will be on the lung and heart by-pass machine.

1 hour wrap-up.

But none of this happened. Instead Luna underwent an hour and a half of anesthesia for a five minute procedure to implant ear tubes.

Saturday, April 24, 2010

It's all in the routine

One of the most difficult things about getting your child through a significant surgery, or even a cardiac catheter-a procedure that requires just one night in the hospital-is trying to get the family Back On Track afterwards.

Tuesday morning Luna underwent her catheter. In the doctor’s words, “she looks as great on the inside as she does on the outside”.

Luna and I were at the hospital exactly twenty-five hours. This is nothing in the grand scheme of things. Yet somehow a mere twenty-five hours in the hospital can pull you under and whip you around in the rip tide of domestic upheaval; leaving you gasping for breath trying to keep up with the laundry and dishes that seemed to accumulate, somehow even in the family’s absence. Thursday morning I woke-up in my own bed; grateful and full of fresh perspective once again. As I took in my first cup of coffee, I scanned the house which seemed to glare at me back, resentful that I had left it in such an unruly state. From there the anxiety seeped in.

Since giving birth to Luna I’ve had dozens of conversations with other mothers, many of whom have endured some hardship themselves; a loss of a baby, a sibling, a pregnancy, or God forbid, two or three pregnancies, giving birth to chronically ill or still born babies. The pain and the loss is everywhere. And strangely, or not so strangely perhaps, once one endures a Difficult Thing of some kind, one seems to draw in other people who have too.

“I’ve lost a lot of people in my life”, a colleague said to me recently over a mid-afternoon business lunch.

I’ve noticed each of these survivors, all women in this case (perhaps simply because men just don’t talk like this), keep sane with strict domestic regimens.

One such woman lost a baby at three days old-on Luna’s birthday-on the cardiac floor at Children’s Hospital Boston (my mother’s coy smile immediately comes to mind here, “there’s no such thing as coincidence”, a statement I heard over and over growing-up).

In the morning when I would drop-off Luna in the room where she worked, she and I would compare home regimens.

“It can be 4 am, if someone get’s up, their bed is made right there and then.”

Her statement looped through my mind for weeks after, somehow bringing me satisfaction each time. “This is how we do it”, I thought to myself.

Another mother and I were commiserating over how when our husbands hang around the house, as is the case now with the newly minted Out of Work Architect, they crimp our style. While swapping survival tactics in the school parking lot, she confided in me,“I line dry all of my clothes, but I can’t have a single article of clothing hanging on the drying rack when we go to bed at night.” I nodded in agreement. I understood, completely.

These women all brought me comfort with their domestic must-dos. It’s how we cope. When the Architect washes dishes (inexplicable to begin with, we do indeed have a working dishwasher), without putting the pile of clean dishes away that he’s stacked like precarious Legos on the counter, it feels like nails being run down a chalk board. But after collecting other stories of Regime and Order from mothers, I felt better about my own frustration.

Perhaps now it won't sound so strange that the first thought upon rising in my own bed after Luna’s twenty-five hour stint in the hospital was, “how can I put this house back together?”

Saturday, April 17, 2010


Yesterday Luna and I ventured into Boston for her day of pre-cath/pre-Fontan labs. The day was long, the traffic crummy, the weather crummier.

But the doctors, nurses and other specialists at the hospital always make it right. This time, just as we were leaving, a woman came rushing into the waiting room. In her arms, boxed toys were piled high above her chin. Luna managed to grab a Little People Pirate set just as we were leaving.

Luna had X-Rays, blood work, EKG, weight, height, vitals and blood oxygen saturation's, AKA sats, taken. So far, everything looks fine.

But mysteriously her sats are up. WAY up. Luna, very gingerly and sweetly offered up her index finger so the cardiac assistant could fasten a tiny sensor on her appendage. Luna held her hand perfectly steady, and immediately the blood saturation meter took it's read. A steady '94' glared on the machine. There are people out there, who have zero heart issues who might read that. The most anyone can read is 100.

The 'sats', probably more than any other vital, is what keeps us heart parents on our toes. Dropping sats and in for a cath our kids go. High sats, and in for a cath they go.

The catheter fellow I spoke with thought that perhaps she had a venous collateral. Collateral are like streams. The body, in Luna's case, with it's tricked-out circulatory system, gets hungry for oxygen. The result is tributaries shoot off the main veins, and shoot up to the lungs, or sometimes down into other organs, in effort to give the body more oxygen. But really it's not effective, and if we let all these collaterals jump ship off their main rivers, the entire body and all it's organs would not be supported.

I asked the cath fellow a hypothetical question: if Luna's sats are high enough, why even move forward with the Fontan? He explained that the body would be fine with partial circulatory; as is Luna is now, but after say 10 years of this, one would run the risk of stroke, or maybe even death. One main reason, that her lower circulatory system skips her kidneys, which is a natural filter for things like small clots. Blood clots, even those that can only been seen under a microscope, can still cause a lot of grief. Stroke probably being the biggest risk.

Come Tuesday we'll find out if any rebel branches have shot off the main rivers to find recluse on other parts of Luna's body. Luna is 'first case', which means we only have to starve her till 7:30 am-at which time, baring-and fingers crossed-no emergency case bumps her out for a later slot-she'll be given the 'happy juice' before she is brought back for the 3-4 hour procedure. If the doctors find any pesky collaterals, they'll be given a good blast of heat-where upon they will recoil into their submission, bringing Luna's circulatory system back to it's pre-Fontan normalcy.

Thursday, April 15, 2010

I Do It!

“I do it!”

"I DO IT!!”

It’s what comes out of Luna’s mouth, oh at least 99 times a day.

The entire dynamic of our house has shifted. It’s damage control; all day, every day. Even Sienna, our four-year-old is part of the clean-up crew.

In a matter of just a few weeks, Luna has crossed over into the Terrible Two category. With two capital “T’s”.

Inside I’m actually relieved. Relieved because the terrible two’s are all about autonomy; and Luna, through her tantrums, is demonstrating some serious intent. At barely three-feet-high, she cannot negotiate the world like her parents and older sister. And this makes her angry. Fuming mad. And frustrated, and finally sad. The most mundane of house hold tasks-like turning on the TV-usually ends with Luna in a puddle of tears on the floor.

From the moment Luna wakes-up, until I man-handle her into her crib at night, every task at hand is I do it. (Yes I wrote man-handle. Luna is an expert climber, shaming the deftest of any monkey out there. But she hasn’t been able to figure out how to climb into her crib; an event that requires me to wrestle her in, against her will)

Height seems to be a thing for Miss Luna. She desires to experience life from the highest perch she can find. Usually in the morning, this is my antique dresser that is over 4 feet tall, where, in a short visit to the bathroom, I will find Luna sitting proudly on top. In the case of this morning, I found her eating a bowl of cereal with a mischievous grin. (honestly, I’m not sure how she got the bowl up there-in tact-with no spillage).

So, my new worry is how this very spirited, rebellious, strong-willed little girl is going to take to being bed-ridden for a few weeks.

Can we suggest a steady dose of sedatives?

I worry too, because this child gets even ANGRIER if one curtails her efforts to “do it” herself. Last night she wanted to show Daddy how she ‘pees’ on the potty. The Architect isn’t clued-in yet on how to handle this. Luna MUST sit on the big potty, and only has me hold her because she’s already fallen into the basin (that was a good start to the morning). Well, The Architect tried to convince her that the little potty is for her. Her retaliation was to bite him with all her might.

Tomorrow starts our journey through Luna’s cardiac catheter and Fontan. We’ll arrive to Children’s Boston at 7:30 for a day of pre-testing. I’m hoping Luna’s desire to charm others will be stronger than her will to do things all by her big-girl-self. We’ll have X-Rays, blood tests and EKGs to get through. All of which require our New Two to sit still.

You can bet that I'll be holding my breath. My planned mantra for the day, borrowed from Luna, “I (can) do it!”

Tuesday, April 6, 2010

Single Ventricle Alphabet Soup

When we first learned Luna’s heart was composed of just one ventricle, the only information I could find on her rare anatomical condition was for Hypoplastic Left Heart Syndrome (HLHS). Because of her unusual heart, bi-weekly echocardiograms at Children’s Boston became part of our regular pre-natal care. And each appointment, where I would sit in a darkened room for close to an hour and a half, while the cardiologist circumferenced my globe-like belly with a forceful probe; I would ask him, “but this baby doesn’t have HLHS?” Kindly, patiently, Dr. Brown would answer my anxious and continuous inquiries the same way each time: “No, this baby’s heart does not fall into the HLHS category of single ventricle formation.”

A recent blog post brought in several comments, many from other heart moms commiserating with me; welcoming us to their pack, Luna is HLHS too, they cheered.

But actually, Luna is not HLHS; she falls into her own unique category for single ventricle kids. Her own acronym still somewhat up for debate, but most professionals have settled on DORV/DIRV-or Double Outlet Right Ventricle/Double Inlet Right Ventricle.

I decided to ask Luna's New Hampshire cardiologist, Dr. Gauthier (Luna has two cards, one in Boston, and one closer to us in NH) for, oh, about the twelfth time how Luna differs from the HLHS kids. One of Dr. Gauthier’s biggest gifts to her patients (or in our case, to the parents of her patients) is her ability to craft the complicated and complex world of the various Congenital Heart Diseases into easily understood metaphors.

This is what she wrote:

“Luna best fits into a ‘single ventricle’ category. This is what it sounds like- for all intents and purposes, she did not divide her heart into two ventricles, and instead of one or the other ventricle being hypoplastic (small), she only formed one (her right), with both internal valves (mitral and tricuspid) entering into this chamber, and both outlets (aorta and pulmonary artery) arising from this chamber-- that is, it would have, if she had formed two outlets. Instead, she formed only one outlet valve, the aortic valve, and the other, the pulmonary valve, was "atretic"- like a door sealed shut- in her case, so poorly formed that it could not be pried open in any way (which can be done in some cases) but instead they had to find a way to surgically bypass this. So she fits into the "double inlet, doublet outlet right ventricle" category complicated by "pulmonary atresia.". This translates to a single ventricle accepting all inflow and pumping all outflow. To make things more complex, her heart formed pointing rightward instead of the normal leftward location, so she has "dextrocardia." And then last, her aortic valve did form, but instead of forming three leaflets, she has only two leaflets opening and shutting. This is the "bicuspid valve". The only significance to this at this stage is that it makes a little clicky sound when it opens but otherwise it works just fine.

HLHS and HRHS are different anatomically and the importance between those two as well as Luna's "single ventricle" version is in the way it is repaired and how much work has to be done to get the blood to flow out to the body. Luna is on the better end of the spectrum compared to HLHS on that front, although similar in that she really only has a right ventricle doing all the work to pump to her body. HRHS has the advantage in that the ventricle that does the pumping is a left ventricle, which is better designed for that purpose, but all three only use one ventricle to pump to the body and the blood is re-routed surgically to drain passively into the lungs (in other words, all three usually wind up with a version of a Fontan, but with varying types of surgery to get the blood to flow to the body and to the lungs).”

Monday, March 29, 2010

Luna turns two!

Luna surprises herself by successfully blowing out her candles.

On March 11th at 5:23pm, Luna turned two-years old. Luna shares her birthday with Rupert Murdoch (that just makes me laugh...Murdoch, the owner of Fox Network, is naturally considered the most evil figure among Progressives-the irony that our little Lu shares his birthday is not lost).

But some other interesting people share her birthday too. Like the guy who wrote the Hitchhiker's Guide to the Galaxy series, along with Ezra Jack Keats; author and illustrator one of my favorite children's books; A Snowy Day; the first children's book with an urban setting. It's interesting to note that all three of these March 11th personalities are connected the world of publishing.

Luna and I spent her special day together, shopping and doing lunch-alone-while Sienna played at school. In the morning we had her two-year wellness appointment. Dr. Goodnews did the usual ears, mouth, heart routine. Everything looked great. It had been a while since anyone had listened to Luna's heart, so I was holding my breath. While the pediatrician was listening to her, in his smiling-casual-everything-is-rosy-kind-of-way, told me he heard a 'click' in Luna's chest. I'm fairly used to clicks and clanks, and other strange noises doctors glean from pressing a stethoscope against Luna's tiny chest. When I asked Luna's cardiologist later what this meant she responded saying, "rather than a tricuspid valve, Luna's has a bicuspid valve, and the click is a result of that anomaly and means nothing more than if she was a blonde, or redhead or brunette." (For a good, simple set of drawings showing the difference between a tricuspid valve, or normal aortic valve, and a bicuspid valve , click here.)

Luna still walks with a young toddler 'toddle', so we wanted to have the doctor check that out as well. Actually, a better description of Luna's gait would be 'waddle'; which like most things, is adorable at two, and becomes not-so-adorable fairly quickly; like by the age of three. Dr. Goodnews had Luna waddle down the hall and assessed immediately that her toddle-waddle is nothing more than a result of her being a late walker (18 months).

Finally, Luna was measured and weighed. She tips the scale at 25 lbs exactly, measuring 33 1/2 inches tall. She's in the 25 percentile for both, which is just perfect for Lu, and where she's been all along. (Nothing wrong with being petite I say!)

Our appointment ended with an assessment of Luna's verbal skills. Dr. Goodnews asked me how Luna's speech was doing. I explained to him that she's not as verbose as her sister was at this age (seriously thank God, I'm not sure I could handle two kids talking on the level as Sienna).

Dr. Goodnews grilled me on the "does she say this?" series of questions, so I offered the doctor the following dialog that had recently occurred between the girls:

Luna: "Nanu WORK in RESTAURANT!"

Sienna: "Noooooo Looooona, you're too small!"

Luna: "Nanu can work in RESTAURANT!"

Sienna: "Nooooo Loooona, they won't let you! You're too little".

(continue dialog for 20 minutes until both girls spill over into shrieks and cries.)

Dr. Goodnews seemed pleased with this exchange, and just nodded his head and said, "She's right on track."

Monday, March 22, 2010

Sweet Relief; House passes Senate Health Care Reform Bill.

Where to begin? Heath care reform passed last night. Health care reform passed last night!!!

This morning when I got out of bed-alarmless, and before kids-the first thing I did was check my iphone. I refreshed the New York Times app, and there, the first feed read; Obama Hails Vote on Health Care as Answering ‘the call of history’.

And I have not stopped crying since. Luckily it’s Monday and I don’t have kids underfoot; because my four-year-old couldn’t understand why I was tearing-up. "Because I'm so happy!" I explained to her, but she just wrinkled her nose and shook her head. As I was driving the girls to school; I tried to explain to her that an important bill passed…”a bill that will make it easier and more affordable for everyone to get the important medicines they need.”

Sienna paused for a moment, trying to make sense of what I just had said.

Then she followed-up with, “where”.

“In Washington DC” I explained.


“Yeah, that’s where Obama lives”.

I could see an unsteady smile gradually spread across her face in the rearview mirror.

This part she got. She knows Obama, one of her many famous quotes can be found here when she was two-years-old. Somehow she thought the ‘O’ in Obama was a possessive. (perhaps because of the spirited tone of the anchormen and women speaking either in favor of-or against of the then-candidate during the election). So Obama became “My Bama” to Sienna.

What I didn’t explain to Sienna because Luna was sitting in the car seat next to her; is that this bill prevents insurance companies from dropping children with pre-existing conditions, while also eliminating lifetime caps, and finally prevents insurance companies from hiking rates and deductibles on families and individuals who place a lot of claims. (as all three of these measures directly protect Luna).

So, instead of explaining all of this to the precocious four-year-old, I drove down the windy country road, all three of us in silence. And for the first time, on a deeper, more personal level, I could understand what it felt like just moments after Obama was elected into office, when camera angle after camera angle depicted a black man or woman weeping. “These tears are real”, as my four-year-old often says, defending her emotions. Yes Sienna, real tears of joy.

Monday, March 15, 2010

Luna’s Stage Three Open Heart Repair has been scheduled.

Luna at Panera Bread on her 2nd birthday; where she ditched her kiddie meal in favor of Mama's Broccoli Cheddar soup.

I had planned on posting about Luna’s 2nd birthday and her subsequent wellness appointment with her pediatrician when I got The Call from Children’s Hospital Boston.

If you ever wondered how these surgeries work; a liaison from the cardiac department calls and gives you the dates and logistics of your child’s upcoming appointments.

We had known all along that Luna would be going in for her sedated echocardiogram and (exploratory) cardiac catheter. What I didn’t know is that her Fontan surgery-last in the series of three surgeries to repair single ventricle anomalies-would be scheduled the Monday after Luna is discharged from her catheter.

So, this is what we’re looking at:

Wednesday, April 28th we’ll arrive at the brisk hour of 7:30 am to Boston for a day of catheter pre-tests, blood work, chest X-Rays and an EKG.

The next day Luna will undergo two exploratory procedures so her medical team can acquire two-dimensional and three-dimensional photos and live footage of her heart and arteries, both from the inside and outside of her body; these being the catheter and echocardiogram. For these procedures the young kids are fully anesthetized (there’s just no reasoning this kind of procedure to a two-year old-and adult can lay still for hours on end, not so much with a toddler).

Because she will be under general anesthesia she will stay the night for observation and be discharged the next day; Friday April 30th.

And here comes the surprise: Luna will then be admitted Monday May 3rd for her Fontan surgery.

It should be noted that the Fontan doesn’t pose any greater risk for her than either of her prior surgeries. The recovery is expected to be about a week. While the age of the Fontan kids (typically two-to-four-years-old) is better than the earlier surgeries in some respects (bigger, stronger, immune system has had time to beef-up), we’re still talking toddlers here. And just their developmental age-the stubborn phase-can keep them in the hospital a day longer. (for a good and easy-to-read-and-understand written description on the Fontan, click here.)

When I asked Luna’s cardiologist if there was any risk with having the surgery right on the heels of the catheter, she said “absolutely not.” Logistically it can be easier for the families as well, which can be summed up like this: let’s get this done and behind us-and all at once please.

There is a chance the surgery could be pushed back a week or so; and that depends upon who her medical team is made up of. Her lead surgeon and one of the most seasoned and senior of the cardiac department left to take another opportunity at Columbia Hospital. But thank goodness we’re talking Children’s Boston here, so there are a handful of other just as senior surgeons who will operate. (The rarity of her anatomy, especially her dextrocardia and ‘mirror imaged’ heart placement can and does keep even the senior surgeons on their toes-but I imagine because of her ‘uniqueness’ she does draw top talent who come across such special anatomy only a handful of times in their career).

So, for now it’s a go. Luna’s primary cardiologist here in New Hampshire will get back to us on who Luna’s dream team will be; and from there it’s on to the next leg of the journey.

Monday, March 8, 2010

More insidious than stealing money, Insurance Companies Steal our Time

Luna practices taking her shoes off before her Synagis injection.

Last week was truly one of the most difficult of my life. Many of you (and I cannot thank enough those who sent emails, tweets and comments of support, you literally carried me through) followed along as I tried in vein to get Luna her last Synagis shot of the season.

The week came to a triumphant end on Friday when I received a phone call from a woman at WellPoint, the parent company of Anthem, and center of loads of negative media attention over the last several weeks; as the CEO was called to testify before congress to defend her nearly 10 million dollar a year salary (a mix of salary and stock options, this number does not include her private jet usage another other perks). WellPoint and subsequently Anthem, earn their profits through the percentage of their earnings that don’t go to healthcare; paying doctors or for medicines and treatments. In other words, it doesn’t take much to connect the dots on why the insurance companies would have virtually no incentive to pay for the costly Synagis treatments. And it is this very jump in profits, during the deepest recession in 80 years, that has caught the eye of Congress.

The WellPoint representative called to say she was following up to my letters I had sent earlier in the week. (I had sent a letter along with my blog posts to both Anthem and Precision RX customer service.)

And apparently I caught the attention of the CEO of Anthem.

But back to WellPoint for a moment. The woman who called was incredibly kind. She said that she was following-up to make sure the Synagis was shipped to Luna’s pediatrician. I told her, "Yes, I had received a phone call from our doctor's this morning confirming delivery".

She went on to say they she was reading my blog, and she and her colleagues at WellPoint, along with her colleagues at Anthem were cheering Luna on.

I was touched. Really. I almost burst out into tears.

But then she went on to say that: lot's of people complain, but I had written in such a compelling way that I wasn't pointing fingers, or ranting, I had told a story about a little girl who was not getting her medicines.

I was honestly moved by our conversation and flattered by her kind words...but I still felt a sour taste bubble-up in the back of my throat. I happen to write for a profession. And I offer social media and publicist services to those in the home and garden industry. And to date I have successfully reversed nearly $8,000 in denied claims through the power of twitter.

But what about those who don't write, tweet and blog for a living? I am, in a sense, an expert complainer. And even I sometimes don't communicate the best I can-simply because I am exhausted in trying to keep up with this thing we’ll simply-call-the-insurance-madness, ON TOP of running my business, along know...that other duty that still no one has given any real value to; that of course being a mother.

So, while I appreciate the kind words, is this really the best we can do?

Perhaps my biggest complaint of all is the time that Anthem steals from me. Last week I put at least 80% of my work time into what many of us call The Synagis Nightmare. Time that is not just taken from me, but since I represent architects, designers and photographers, we can justifiably say that Anthem stole their time as well. And time is money. If I'm not out pitching, writing, blogging and tweeting for my clients; it's only diminishing my efforts to land them more clients.

Since posting on the topic; dozens of mothers and fathers have emailed or stopped me to say their Synagis has been discontinued for their preemie, heart baby, or child with cystic fibrosis.

Which once again begs the question: why do the makers of these powerful and lifesaving drugs bother to tease us? If no one can afford them, and the insurance companies have no incentives at all to pay for them; then what is the point?

And back to Luna's Synagis shot. It dropped from $2791.64 to $1825.13, still no one has been able to tell me why. Just a week ago, before I blogged about the topic, the shot would have cost our family nearly $1000 more.

Thursday, March 4, 2010

Synagis Follow-up

Yesterday I posted a blog about, how Luna and I were treated like circus animals (as described brilliantly by one of my friends)-all in our quest to get our two year old a much-needed and time-sensitive shot called Synagis.

Just after I posted my blog about the Synagis/Anthem/Precision RX heist, I sent the post, along with an email to the aforementioned parties.

By 6pm when I heard nothing from any of the three, I have to say, I was feeling flat-out depressed and started contemplating how I could get my family out of this country, and into a more civilized nation; one where healthcare runs smoothly and affordably-and one where half the population isn't crying government takeover (a very clever and carefully crafted message to instill the very outcome it's generated).

Finally, last evening I checked my email around 7:30pm and a rep from Anthem had written to say "thank you for the note" and asked me what state we were in-to which I replied immediately: New Hampshire.

About a half hour ago, Precision RX, the suppliers of Synagis, the shot that Luna is now about 3 weeks over due for; called to follow-up.

This is what the very kind (and really, the reps-all women-are truly nice, it's the system that is maddening) said:

"Renata from the pharmacy solutions department at Anthem called to say that your co-pay for the drug would be $1825.13, and to go ahead and process it immediately".

This new figure of $1825.13 is indeed wonderful news, a vast improvement over the original $2791.64 that was due.

And somehow (as in it took a day of blogging, tweeting, emails and phone calls) everyone is perfectly fine with billing the balance after the $800 down payment into monthly payments of $512.57

I asked the Precision Rep why the co-pay dropped nearly $1000, and she could not answer.

Footnote: I actually had a few angry commentors to my previous post, one in particular called me, "full of crap". I think the most diplomatic rebuttal is to say, I love business, and if you are selling hand bags, furniture, jeans, paper clips and even coffee; by all means, sell for the highest you can!

But when it comes to lifesaving drugs, medicines, and medical treatment for kids (and adults); shouldn't we be a bit more transparent with the cost and yes, fixed with the fees for these services?

Wednesday, March 3, 2010

The Synagis Scam

Synagis is the brand name for an inoculation that is given to high risk babies and toddlers to stave off RSV. During the RSV season, which is said to run from October to April, our special kids (sometimes referred to as chronic-yuck) are brought into to their pediatrician every 30 days to receive the biggest, sharpest, longest, scariest injection you've ever in your life seen. And I'm not exaggerating here, even the nurses and doctors will admit, it's a beast. So much so, that my 4 year old, who typically joins Luna and me to these nerve racking appointments, has coined the term 'points' for the injection.

Medically-needy kids (another term I loathe, but I don't have the time to invent a new least right now) are perscribed to receive the shot from birth until they reach 24 months of age. Luna technically has just one more shot to receive, since she will be 2 a week from tomorrow; but since she is going in for her Fontan surgery early this summer, it is advised that she gets the inoculation through the end of the season-which would mean vaccinating her into April).

What is medically advised and what one can afford are two totally different things. A thought, which apparently, none of the drug makers care to consider.

Two weeks ago I started making my regular calls to the two pharmacies we use to order the medicine. Ascend Specialty RX, which is local-ish to us, and located in Portland, Maine is wonderful to deal with. Only problem is they will not accept a payment plan. Period. And I think (need to look further into this) the reason is, their contracts with the Big Insurance Companies don't allow it.

This of course begs the question: why is an insurance company dictating how and when and essentially what kind of treatment we receive? To paraphrase someone's tweet on twitter last week: I think the big disconnect here is that insurance is not healthcare.

After learning Ascend couldn't accommodate a payment schedule, I moved on to Precision RX. They are located in Indiana, and while most of the reps I deal with there are pleasant enough, the company is completely inept.

On February 22nd, after about 2 hours of calls and wait times, I was assured it would be okay to pay an initial payment of $800 with monthly payments of $500 thereafter, for the remaining of the balance. (another tidbit of information here, the total price at Ascend, for the same shot, same exact dosage was $2400. At Precision, once it was determined that we would need a payment plan, that price climbed an additional $392 to $2791.64).

Disgusted, but determined to get Luna inoculated, I gave the rep our HSA account number, she deducted the $800 and the shot was scheduled to be shipped to Luna's pediatrician the following week.

Not so fast.

Yesterday morning I managed to get the girls up and out, so I could drop Sienna at school then race the 30 miles to Luna's doctor to make the 9am appointment.

The two of us tumbled into the office at the stroke of 9, and were immediately ushered into the tiny, dated examining room.

The nurse walked in a few moments later to explain there is no Synagis shot in the fridge.

Reeling, and knowing just what was happening...(I learned last year that if you need to go on a payment plan for these shots you are stonewalled; sure in this country you can finance your house, your car, your mattress, but a medically necessary shot for your child; nope, can't be done).

So I bundled Luna back-up, strapped her into her car seat and called Precision, putting the phone on speaker so I could get a head start the 30 mile drive back to Luna's school.

Finally after about five minutes on hold, then another five while the rep spoke with a supervisor I was told something along these lines: The shot was cancelled, something to do with Anthem not giving the proper referral, yes ma'am we'll look into it...our supervisor is on it...we'll call you later today.

It's now 9:30 the following morning, and I have yet to hear a word

Monday, March 1, 2010

Fundraiser for Luna

A few friends have brought up the idea of having a fundraiser for Luna. The idea inspired, frightened and humbled me all at once. I wasn't sure if I was supposed to get the ball rolling on such a lofty undertaking. But before I could even give it much thought the very generous owner of Gymboree Music & Play in Rye, NH has offered, through Seacoast Mother's Association, to organize one herself.

Her name is Marlow Rahn, and just about anyone who has young kids on the New Hampshire Seacoast, and has brought their kids to Gymboree, knows Marlow.

I'll let her put into words what she plans to do, but for now she asked me to write-up a third person account of Luna's heart defects along with the level of care, surgeries she has undergone and will undergo; and subsequent cost of it all.

The fundraiser will run starting the month of April, which is significant since it will be the beginning of Luna's journey through her open heart surgery.

Marlow has asked me to include a selection of photos as well, starting with her birth, including some post-surgery shots, and of course some fun ones depicting our chubby-cheeked sweetness in all her glory. (the photos are chronologically backwards, starting with the most recent first...scroll down to see her first days of life)

So, for those of you who have been following her story since her birth, this will be a recap; and for those of you just learning about the amazing Lu, this will be a nice introduction.

In October of 2007 while just 20 weeks gestational age, Luna’s parents learned the baby they were carrying had a series of rare heart defects. In utero it was difficult-because of the complicated nature of her anatomy-for the doctors to determine exactly what they were. But it was known that she had a single ventricle, enlarged aortic artery, either pulmonary astresia or stenosis, and finally dextrocardia, the condition that made it so challenging for doctor's to decipher her heart; an otherwise harmless condition in which the heart is rotated mirror image from what it should be, and located on the right side of the chest (rather than, of course the left, where most human hearts sit).

Luna's parents were given the choice to either terminate the pregnancy at 21 weeks, or continue with the birth and ensuing three operations that would ultimately reroute her blood flow and keep her alive.

On March 11, 2008 Luna was born, otherwise completely healthy and weighing in at 7 lbs even. On her second day of life she underwent open heart surgery to install the BT shunt-and fared exceptionally well. Not a week after surgery, baby Luna was discharged from the hospital and sent home.

At 6 months of age Luna underwent the Glenn operation-a surgery in which the superior vena cava is rerouted into the right branch of the pulmonary artery; giving the overworked single ventricle a break (since esentially the lone chamber must do the work of the missing half).

After two cardiac catheters (both with angioplasty-to enlarge her left pulmonary artery that had significantly narrowed) and countless echo cardiograms, it was determined by Luna's medical team that she has one single ventricle. Her cardiologist, Dr. Gauthier describes best her condition here:

in these complicated cases, it can be hard to tell whether it is a single right or a single left one. Luna is felt to have a single right ventricle. She also has a double inlet- both "AV valves" or inlets into her ventricle enter into the one single chamber, giving her "Double Inlet Right Ventricle", even more rare than Double Inlet Left Ventricle (DILV). Along with dextrocardia- heart in the right side of her chest instead of left- she also has transposed great arteries, meaning the aorta is in front of her pulmonary instead of behind. However, many single ventricle kids have pulmonary stenosis, but she goes beyond "pulmonary stenosis" (pulmonary valve has a very narrowed opening) to what she has, "pulmonary atresia" (valve not open at all, or never formed). Luna will undergo the same surgeries as many other single ventricle kids to re-route blood flow.

Starting next month Luna will undergo more procedures to determine when she will go in for her final and last repair, the Fontan surgery. In layman terms the operation is really, really sophisticated plumbing. Before Luna is operated on she will under-go a sedated echocardiogram and a catheter. Both are exploratory, so her surgeons will know exactly what to expect come the big day.

The cost for these sophisticated surgeries can run a couple hundred thousand dollars each. Most heart kids hit the million or 2 million dollar cap on their lifetime insurance by the time they reach five years old. And Luna is no different. While the family has insurance, budgeting and planning for her care is a moving target. The family's 2010 insurance rates doubled from the year before, mostly because so many claims were placed for Luna's care.

The total family burden for Luna's 2010 care is projected over $20,000. This is before denied claims or out of network issues take affect, which could easily double that amount.

One of the more costly medical needs Luna has is her Synagis shot. During the RSV season, heart babies, young children with upcoming surgeries, and other immune compromised infants and toddlers must get an injection every 30 days to stave off the potentially deadly respiratory disease. The cost for the shot depends upon the child’s weight, and ranges from $2000 to $3700 per shot. Only a few pharmacies in the country administer the inoculation, and all require full payment up front before they will ship the medicine.