Tuesday, August 9, 2011

Crossing State Lines

Luna is beyond her three open heart surgeries that were required to correct her circulatory system. Surgeries that were vital for keeping her alive. The roller coaster of shuffling our lives in and out of hospitals, juggling work schedules, finding hotels, sedated catheters, and fighting for her synagis shots-making sure that the insurance will cover them every month (which they ultimately didn’t) is behind us.

The heavy-duty surgeries may be behind us now, but Luna’s diagnosis will always remain the same. DILV, DORV, Transformation of the Greater Arteries, Dextrocardia, Pulmonary Stenosis and Pulmonary Atresia-those will never change or go away. They represent structural abnormalities in the heart and arteries-unlike say, cancer, which thank goodness, can and does go away for good.

To bring you up to speed on our life, The Architect has been gainfully employed since December. Our family is off Healthy Kids and now on Tufts. New Insurance, new page. Or so I thought.

Tufts is a unique and not very prominent health insurer. Founded in Boston, it caters pretty much to the greater Boston area. And since we have a HMO, we need those annoying referrals. For everything.

The Architect also works in Boston, and we live just over the border in New Hampshire. You know when you hear Politians saying, “Let health consumers cross state lines! It’s a sure way to increase demand and thus competition”.

Um right. What they do not understand, or what they are forgetting, is the doctor-patient relationship. Shouldn’t that drive health care? Politians try to ‘business-ize” health insurance-though their logic is often skewed and the message is contradictory. Take Luna’s case. Sure, we can drive down to Boston. But we have a wonderful relationship with her cardiologist who practices in New Hampshire and Maine. Not only is it easier, and less expensive to cart my family out to the hospital in New Hampshire, but Luna knows the team. Keeping and maintaining the relationship with your medical team, and the consistency it provides, is paramount. And this is doubly so for children. A familiar face eases a child’s anxiety. Let’s face it. It sucks to have a child who has a life-long medical condition. But the suffering, branding, and flat out discrimination we face from our health insurers is inhumane. Bottom line: health insurance is great. If you are healthy.

Relieved that we no longer have Almighty Anthem, I thought we would be fine for our appointment today. Luna’s big, expensive stuff is behind us (for now…the future could bring, realistically, a change in her health (giant knock wood), and/or new technologies and surgeries that could help her live to her fullest.)

But for now she only needs annual cardiology appointments where she undergoes an EKG, pulse test, blood pressure check and a 60 minute echocardiogram. It’s an expensive visit, but it should only be annually.

The blow-back with Tufts started subtly. Her primary care physicians (who I adore, and who are so supportive with our trials with insurance), told me when I was getting her referral.

“We need to carefully describe her diagnosis”.

Another woman at the office, working on her paperwork explained, “Her diagnosis is too long.” The insurance needs to be able to fit it into their system.

I smiled stiffly; with two young kids attached to me I couldn’t get into questions.

I later found out that Luna’s diagnosis could be considered “too long” making referrals anywhere from difficult to impossible.

I held my breath and marched myself, Luna and her sister out to her cardiologist. Assuming the referral went through OK, I arrived to the front desk only to learn the entire hospital does not accept our insurance.

There would be no appointment for Luna. In the end it had nothing to do with Luna’s referral, and the potentiality that it would be “too long”. The entire hospital in New Hampshire simply does not contract with Tufts. We’ll try this again next month in Maine.

Luna being Luna in this photo. Her sense of humor and wit always gives me a lift. Though it was a cloudy day, Luna insisted on donning a pair of Dora sunglasses on her head for our four hour excursion for her (non)visit. Her cardiologist came out to the lobby and asked to see Luna's glasses. (Doctors are sneaky like that...really Dr. G just wanted to check her lip and complexion color). Later that night Luna asked me this, "Mom, did we drive all the way to the doctors just so she could look at my glasses?"

Tuesday, May 31, 2011

Tiny Hero

Memorial Day weekend. Next to the 4th of July, it is my favorite time of the year. The unofficial kick-off of summer; it's marked by parades, barbecues, and maiden trips to the beach.

This Memorial Day also marks the one year anniversary of when Luna had her Fontan surgery. As I watched parades and read tweets honoring those who served our country, I thought to myself how fitting it is that Luna's own battle is remembered during the same weekend.

Last year at this time our family was cooped-up at Children's Hospital Boston. The four of us squeezed into Luna's ICU room and smiled, laughed, cried, cheered, and cajoled her through her recovery from her third and last open heart surgery.

Happy Memorial Day Luna. Thank you for making us all so proud!

Here is last year at this time...

Luna, post surgery.

And here is this past weekend...one year later.

Ballet recital; Luna is the third from the left. Her sister Sienna is on the far right.

Memorial Day BBQ 2011.

Sunday, February 13, 2011

Voices of the Heart: 15th Annual New Hampshire Heart Ball

Last Friday I spoke before an audience of 400 at the Sky Meadow Country Club in Nashua, New Hampshire. My speech was about our journey with Luna (I accidentally wrote 'to' Luna, which could also be accurate-the language and world we were about to embark upon was about as foreign to me as the moon.)

The transcript below is an abbreviated version. For a bit of levity, I added in the fact that Luna's cardiologist, the one who gave us her official diagnosis when I was 22 weeks pregnant-is referred to as 'Dr. Gorgeous'. And how there were worse things than being stuck in a room with him for hours and hours, week after week, for my regular echocardiograms.

Otherwise, the speech wasn't too much of a disaster. Afterward, the director asked me to speak at an engagement in April. I naturally accepted. There are worse things to do in life than spread the message of hope.

2011 Script

Sabrina Velandry; Journey with Luna

In October of 2007 my husband and I went in for the “fun” ultrasound to find out the sex our second child. We had a bet going; who ever guesses the sex correctly gets to name the baby. Paul guessed right with our first child, who then was a sixteen month old girl named Sienna.

We entered the darkened ultra sound room and I laid for what seemed like an eternity while the tech rolled the greased-up probe over my enlarged belly. She informed us that we were to have another girl. Paul and I exhaled and smiled, another girl. We would have two girls just about exactly 24 months apart-we were excited.

Paul left to pick-up our toddler from daycare and I stayed back to finish-up the examination. As I was sitting on the bed in the examination room, I could hear whispers from behind the door. Though I could only make out certain phrases, I heard the words, “something is wrong with the heart.”

My OB entered the room just moments later with a broad, forced smile. “We’re going to have to take another look at the baby’s heart. It’s just a precaution, but we’re going to send you to the hospital next door so we can get a better look on their equipment”.

I drove over to the hospital in a complete daze and went in for a level two ultra-sound. There the technician only needed a few moments to discern my baby’s heart: “I don’t specialize in fetuses, but I can tell you with authority this baby is missing half her heart.” My mouth somehow formed words and I managed to ask: “what should I do?”
“I don’t know, that’s all I can tell you.”

I exited the hospital and walked into the busy parking lot. For those of you who have been dealt a difficult diagnosis, you may know the sensation of feeling like you are outside your body. That’s how I felt that day-like I was actually looking down on myself from above.

Our lives changed completely starting with that warm October afternoon. What I didn’t realize then, is that they were going to change for the better.

"Your child, the baby you're carrying...she has a very rare and serious heart defect."

The doctor continued in hushed tones. Speaking in a language that was completely foreign to me; pulmonary atresia, pulmonary stenosis, double outlet left ventricle, dextrocardia...

The risks and complications, however, were words I understood.

The diagnosis, spoken by a rather handsome Boston cardiologist sprayed my soul like shrapnel. Some pieces of the information settled deep within me. Still others bounced off. I imagined the phrases 'feeding tubes' 'heart transplant' and 'heart failure' laying on the ugly grey institutional carpet in the tiny consult room in the hospital.

Paul and I left Boston numb. Quietly, without speaking a word to each other we snaked through the Fenway traffic. A huge, late October Harvest Moon beamed down on the Red Sox fans. Later, we would give that Harvest Moon to our baby in the form of a name. Luna, Goddess of the Moon.

The air was thick and warm. The city vibrated. Game 2 of the World Series, Boston vs. Colorado. I stared at the 20-somethings skipping and yelling in the streets. With my window open all the way, some of the revelers nearly brushed me as they skipped past the car, yet I felt a million miles away from it all. I was a tourist, riding a tram, viewing American History comfortably from the darkened museum-or so I felt at that moment.

"This baby will be the best thing that happens to us", I thought, as we pulled on to the express way.

After the official diagnosis we were given three options. The first was to terminate. At 21 weeks pregnant this thought was unimaginable. The second was to give birth to the baby, but not seek any medical help for her; “a natural ending,” an option that basically means you watch your child die.
The last option was to seek medical help, and put Luna through the three open heart surgeries that would need in order to correct her abnormal heart and circulatory system.

My husband was terrified of the mountain debt that we could incur caring for such a medically needy child. Though I winced at his overly logical thinking to the matter, he was right. Caring for a medically needy child can financially destroy a family. Jobs are left, typically by the mother, so she can take to the front lines in a never ending war against the insurance companies. I too, eventually was sucked into this war. Ultimately I would have to temporarily abandon the company I was growing so I could provide day to day defense against our insurance company; who denied coverage, ignored our claims, or falsely charged us for Luna’s rigorous care.

Like many do when faced with a life crisis, I dug deep spiritually to see what kind of guidance I could find. Never one for church, I read books on the power of positive thinking. One evening while my husband slept soundly next to me, I thought the words “this baby is going to be the best thing to ever happen to me” again and again in my head. At first I didn’t believe my own words. But soon I would gain peace from stating this phrase over and over. One evening while practicing this meditation a warm feeling came over me, and it was like the sentence, “this baby is going to be the best thing to happen to us” were spoken back at me. I knew then that this child was going to be OK, more than OK, I knew that our baby girl would be special.

After the news settled in and after I knew there was no way I could end-deliberately end-her life at just 21 weeks, a funny calm settled into me.

I've always welcomed change and yearned for adventure. It was all how you chose to look at it I thought. This too would be an adventure.

Luna was born on March 11, 2008 and endured her first surgery, the BT shunt, at two days old. At six months of age she underwent the Bi-directional Glenn, and at age two she had her Fontan. In between her surgeries, she underwent three cardiac catheters. Two exploratory, and one to cauterize an errant blood vessel.

Next month she’ll be three years old. She is a spunky, smart, and determined little girl. In a recent progress report, her teachers praised her as a natural leader. Her favorite phrase is “I do it.” Indeed, Luna can do it! With the assistance of the best doctors and medicine in the country, and her strong will to survive, Luna ‘does it’ and does it well each and every day!

Thank you for your support!

The lovely Erin Fehlau from WMUR Channel 9 News, and Dr. Paul LeBlanc, President of Southern New Hampshire University (both were charming and funny emcees!)

Funny story about this poster...at one point during the night, it toppled over and fell on the people at the table sitting in front of it. The Architect and I chuckled while we watched the staff struggle with it, then finally cart it away.

Dear friends Amy & Charlie.

The Architect.

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.