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.