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!"