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.


Love,
Paul, Sabrina, Sienna & Luna

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!

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?!

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.

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”.

“I KNOW DADDY!”

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.”