Table talk (Thoughts on talking to your young children about an upcoming Fontan procedure)

Life is pretty much the same at our house as it at any other. The girls are in school Monday through Thursday (still clinging on to that last day of the week with them, but it’s becoming increasingly more difficult with each career leap).

They go to school in our tiny village, and I pick them up around 5 o’clock each day and bring them home. Several nights during the week it’s just us girls-The Architect works in various corners of New England, depending upon the day.

I’m a stickler for eating dinner at the table, with no distraction of TV, phone or other handheld devices. (I will proudly admit that both girls eat pretty well, and I attribute this to my ‘old-fashioned’ regimen of dining at the table).

Two nights ago we were enjoying The Architect’s homemade chili with chips and shredded cheese-for the second night in a row-when Sienna out of the blue said, “Mommy, does Luna need to get a point this week”. I was startled at the child’s-who will be four later this month-astuteness to the topic. I had earlier that day received the call from the pharmacy informing us it was time to ship Luna’s Syngeris shot again. I had shoved the phone conversation to the deepest corner of the brain, not wanting to think about once again where we’ll find $2800 in cash for the shot.

But before I could think much more about it, Sienna continued with, “Luna has a special heart. Her heart is different from mine. That is why she needs so many points.” (Points, if you haven’t already figured out, is Sienna’s word for shot. I love her moniker so much that I don’t bother to correct her).

I decided this would be my chance to start to explain the year ahead.

“Luna will be going to the hospital later this year.” I say as casually as possible.

“But will she be home for bedtime?!” Sienna says,-her voice lifting into a whine-gives me an instant headache.

“Well, she’s going to stay there for a few nights; the doctors have to fix her heart a little more”.

All the while, Luna, sitting across the table from Sienna; is repeating everything we’re both saying, “Nanu stay at the hospital?” only her eyes are about the widest I’d seen.

The exchange lasted for all of five minutes before the girls went on to the topic of dessert. Later that evening, in the midst of changing them into their “cozies”, Sienna threw a temper tantrum-she said over her eyes “feeling tired”-but I wondered if it had to do with what we talked about earlier.

After they went to bed and the house was quiet enough for me to think, I realized the journey through this next heart surgery will be just as much about Sienna as it is Luna. Not only are the girls truly inseparable (even at school there stands just one wall between their class rooms-and I’m told they visit each other often); but from the smell of Purell hand sanitizer, to the beeping of monitors, and even the feel of the weight of a thousand emotions swirling around us; Luna’s experiences will be just as much a part of her older sister’s memories, as they will be her own.

Diapergate: The trials of flying with cardiac (and non-cardiac) kids.

The girls playing in Sangster International Airport. (A closer look reveals a scrape on Luna's nose incurred from a nasty pool-side spill)

I thought I would follow-up to my last post since basically everything I wrote about CHD kids needing the breathing assistance of a Portable Oxygen Concentrator in-flight was completely wrong.

This past weekend we returned from our family adventure to Montego Bay. I was educated and convinced that Luna's blood-oxygen saturation would dip into the blue zone and worried that just trying to get her on the plane-taking meticulous caution that she not go through the XRay-would send us to a remote detainee room. Well this is what happened with all of that: Nothing.

The week prior to our vacation I had spent hours and hours making arrangements so we could fly with a Portable Oxygen Concentrator in case her sats dropped; in addition to this I made endless phone calls to make sure we had a note in-hand explaining that Luna is filled with various hardware-just to make doubley sure if she beeped going through security that she wouldn't be mistaken for a female-bomber. (Not only was I worried about her beeping and becoming subsequently upset, but we have been cautioned that some of her internal metal could become magnetized through XRay which could shift her anatomy in ways that I don't even want to imagine).

Once we shuffled through security where, incidentally, we didn't even need the note I worked so hard to get (Luna was given a gentle pat down in lieu of the XRay, which strangely, she seemed to enjoy) we then boarded the plane and took our seats in the very last row. Once we reached altitude I watched and waited and waited and watched Luna for signs of blueness. But her Smurf-lips that emerged mid-fall when the weather cooled down never made an appearance. I then decided I would simply don the oxygen on her little round face. This involved placing tubing around the back of her head and then fitting the nose piece just under her nostrils. Well, the child is nearly 2 years old, so you can imagine how that went.

Defeated and getting increasingly panicked, I decided I would sat check the entire family. Sienna, The Architect and myself all read at about 94%. Finally Luna agreed to keep her tiny finger still. Her reads? Well they read a perfect (for her) 83, 84, 85... I keep the monitor on for several minutes and re-checked everyone. The consensus? Cabin pressure is kept at 94-95% oxygen levels, and not the top-of-Mount-Everest-I-can't-breathe-altitude that everyone warned us of.

The Architect, being an Architect and really adept at anything architect-y or involving engineering, physics, math...just about anything where my mind goes completely dormant; had preached this all along. "Cabin pressure is kept at near-to sea-level altitude, think about it!" was he mantra for weeks.

Oh well, an ounce of prevention equals a pound of cure. Our biggest challenge during the flight was bringing Sienna to the bathroom every-five-minutes. A bounce of turbulence would send the overly-dramatic near-four year old into a lovely spread eagle, with both hands cupped over her crotch complete with her screaming, "Moooommmmy, the pee is coming out nooowwwwwww". And each time I took her to the pint-sized bathroom I had to hug her legs while she peed so she "wouldn't fall in the potty and out of the airplane."

But perhaps the biggest upset of all was when the flight attendants sitting in the back with us, more than a little fatigued with their Boston to MoBay route, grabbed the microphone to make this announcement: "Ladies and gentleman, would the person responsible for leaving the dirty diaper on the floor of the bathroom please come forward to remove it." All eyes settle on our (innocent) family of four. I smiled nicely and mouthed "IT WASN'T US".

No one ever came forward. And after the five plus hours of flying we landed smoothly in sunny, muggy, hazy and hot Montego Bay. The pilot announced our arrival and the entire jammed-packed plane erupted into applause. The girls, like all kids, love clapping and joined right in. And with that Diapergate was quickly forgotten.

Up in the Air

The girls play a game of 'make like a statue', while taking their SATS (blood oxygen level). **Note, neither read is accurate, the spot-odometer will not record properly with movement.

This coming Saturday we are taking a family trip to Jamaica. We booked our direct flights from Boston to Montego Bay a full year ago. Traveling with a family, especially with Luna, who will need the assistance of a Portable Oxygen Concentrator (POC) to breath at 33,000 feet; we just didn't want to mess around with lay overs. Just get us there in one foul swoop please.

As you can imagine, trying to obtain a POC in this post-9/11 world and post Christmas Day scare is no easy task. I personally have put about 10 hours or so into this effort. I thought I would document and post for the world the ABC's of air travel with Portable Oxygen Concentrators.

There are two different kinds of POCs; Continuous Flow and Pulse Dose. Luna's cardiologist prescribed the continuous dose, and with further research I learned this is why: Luna is only 22 months old and she has never been fitted with oxygen. Her sats sit at about 85% now at sea level, which simply put means; she can function just fine. However, put her up in the air, at the altitude equivalent of standing on a really high mountain, and her sats could be as low as the high 60's. She can hang there for about an hour (as prescribed by her cardiologist), so for the 4 hour trip, we've arranged for her to have an oxygen tank. Luna will travel with a continuous flow POC which was a little tougher to obtain for the flight-because of it's larger size. A pulse dose does just what the title suggests: bursts of oxygen are released from the contraption every minute or so. An adult can regulate to this pattern and take deep breathes on call. A 22 month old, not so much.

But the airlines are not all that crazy about having people wheel a tank of air (a combustible, no less) the size of a small piece of luggage on to the airplane.

You'll want to check with your airline, but don't be fooled into thinking you need to use their oxygen vendor. I called and was directed to this page at www.usairways.com There you will be able to download and print a physicians statement. And you will also find a link for Oxygen To Go-the advertised vendor on the site. If you have a little one flying, don't even bother calling; they will tell you you can only fly with pulse dose-but after a lot more digging I found that this is the unit you need, and it does supply continuous oxygen flow, and most importantly, it's FAA Approved.

Since we live in New Hampshire I used Keene Medical supply who are very nice to deal with. I went in yesterday to order and I will be back on Friday with Luna to pick up the unit and do a test run while I have her with me.

Insurance: another area where I wasted an hour of my life, so here is the quick lowdown: If your kid needs oxygen on a regular basis, you will have no problem getting it covered. Well, thankfully Luna doesn't fall into that category, so this is how the conversation went with me:

Me: "I really want the rental cost of this to go against our deductible."

Anthem: "Well, our policy is if the patient needs oxygen all the time, then we cover, if not, then typically not."

Me: "that shouldn't matter, she *needs* it to fly, and that is the issue here".

The subtext of course reads: "You don't *need* to fly."

I guess we all have different needs.

The claim is still pending, but since I need to reach our deductible anyway, I can anticipate paying $235 for the unit and another $50 for the batteries. The rental is good for a month. This is actually a good price.

So, wish us luck as we embark on our family adventure. Here's to hoping everything will be, as they say in Jamaica, "Irie Mon!"

The Anthem who stole Christmas

A week before Christmas we learned that our out of pocket (OOP) was to jump from 5K in '09 to 10K in '10 (how convenient of the insurance company to coordinate deductible with the year). The premium, increased something like $1 per pay period, which puts us squarely at $800/month for a total of $19,600 OOP for the upcoming year.

Health insurance is a major problem in this country. And I am thankful that it has been front and center of the national debate and media for the better part of a year now. But we still have a ways to go, and perhaps the for first time ever, I envy those living in Europe and Canada. Mothers who have heart kids of their own, who encounter virtually none of the financial fall-out that we are going through. Mothers and Fathers who undoubtedly are less-stressed and who are not bogged down with fights with their insurance companies. And as far as I can tell, their kids receive the same treatments and fare just as well as their American friends living with the same anatomical deformities.

The American Dream dissolves into the American Nightmare.

Every parent's wish is to have healthy children. Through the advances of medical technology, I feel we have that with Luna. It's the insurance costs that is killing us.

Take this scenario (a totally fictional account created for the sake of this argument):

Suppose you were working at a company with roughly 100 people. The company is about 50/50 split between men and women, and about 65% of the company's employees carry insurance for their entire family.

Of that 65% one woman had a baby via c-section, one family learned their teenage daughter had a rare bone cancer, and one family has a baby who, in one year alone endured 2 open heart surgeries, 2 catheters, and 2 sedated echo cardiograms.

This December the HR gal begins her dreaded and laborious task of re-upping her health insurance contracts. Of the five companies she calls for rates, the only one who will return her call is the same carrier she is dealing with now. Sure, they say, we'll insure your company. But for 2009 we where upside down 130% so we're going to double your employees out of pocket for 2010.

Now, would anyone like to tell me how this story will end, when in 2010 we *know* the heart baby will incur another 1/4 of a million in claims for her next open heart surgery, cath and sedated echo?

The entire company not insurable? Nonsense you say! But isn't what these free-market zealots wail about? "Let the markets correct themselves, let competition rein!".

Ah-huh. Except for that tiny detail that everyone seemed to forget: you cannot negotiate your health. And you cannot leverage a human life.

I love business and am currently growing one devoted to cultivating and advocating for the creative industries. I love, love, love the thrill of the negotiation. Negotiation is all about leverage. And faking to the party trying to sell their goods or services that you somehow do not need their goods. Case in point, I recently negotiated ad space. I really did not *need* this full page ad, I wanted it. The 'seller' knew this, both parties know the publishing world is hurting, so I get a great deal for my client.

Or, you want to buy that house, but there's something about it that just doesn't feel right to you. You walk away. In this market you'll find five others-better than the one you just toured. But when you know your kid is going to cost a fortune, and you know that in 2010 she'll endure more medical care than most do in a lifetime; how can you possibly walk away and find an insurance company who will cover that? A company, whose business practices and profit margin are not based upon the services they offer, but rather, on the ones they reject (wow, sounds like a pretty incredible company...how can I run one of those you say!)

So, until we somehow come to grips with the fact that health is not a 'free-market' kind of thing, and every time a health insurance company makes a windfall profit, and your stock spits out another dividend, just remember, that happened solely on the fact that the only way for an insurance company to make that windfall profit is to reject coverage for kids like Luna or, simply not insure entire companies who have one or two medically needy folks on the policy. Oh you say, but isn't that like everyone? Uh-huh.

Luna's bi-annual cardiologist check-up.

Miss Luna, 20 months old.


This past Friday I took the girls to Luna's cardiologist appointment. At this stage in her young life, she sees the card every 6 months; and most likely, once she gets older, and has her surgeries behind her, she'll see a cardiologist once a year.

She was weighed, measured and sat checked.

On all fronts, she is doing fantastic. She's now just at the 40th percentile in weight, tipping the scales just past 24 lbs. For height she's 30 inches and her sats are at a nice 85 percent.

I wish I had thought to bring my camera, I think she may have been one of the cutest echo patients (biased, I know:)

Now that she's a big, talking 20 month old; it's easier in that she can communicate her needs to us.

A sampling of the dialog went like this:

Cindy the echo technician:

"Does this hurt?"

Luna:

"Yes"

Cindy:

"How about this?"

Luna:

"Nope, it tickles".

This type of repartee went back and forth for some time.

To give you and idea of how long these appointments take, we; Sienna, Luna and I watched the entire movie Aladdin, and then one full episode of Max & Ruby.

The results of the echo were very positive: the LPA (left pulmonary artery), the one that she needed the balloon catheter for, sustained it's 'puff' and is looking great (thus provides nice blood flow into her heart).

Her heart function is good.

And this was a bit of interesting information: we learned her aorta, since she has grown, has more room to 'breathe'. Some background on Luna's aorta: back when we were first diagnosed, we learned that she has a big aorta (never judge someone by the size of their aorta...sorry, really bad heart humor). Well, apparently it was SO big that her little body was squeezing in on it, which in turn could affect her heart function. Now that Luna is bigger, her aorta has more room, which may also contribute to one of the reasons that we're not seeing her sats falling at this point (which normally, due to growth and increased movement in heart kids, you will see sats fall in the year or so between the Glen and the Fontan surgery).

The only big upset of the appointment is that we learned Luna's surgeon took a job at Columbia. We *could* go down to NYC for her Fontan (ha, ha, ha), but we've decided that there are other top surgeons at Children's Hospital Boston who could do the job.

With the Big Appointment behind us, we can now exhale and enjoy the holidays. Luna's next scheduled appearance with the cardiologist will be in April. It will be then that her team decides when she goes in for her third and final repair, the Fontan.