A Tale of Futility….. and Portable Oxygen Concentrators

I knew it wasn’t likely.  Seeing as I had just been contacted by a friend with the same exact hope.  She, too, learned the hard way.

You know what they say about hope.  It springs.  Eternal. Unfortunately it makes no promises about actually panning out.

Reed and I have talked before about trying to get a portable oxygen concentrator for Parker.

Right now we either haul oxygen bottles, or we lug the monster concentrator along with us.


When Parker goes outside we move the monster concentrator to the back of the house, plug it in the furthest socket. It just makes it to his play set.

It’s seriously heavy.

There are some places where oxygen bottles just don’t cut it.  Like when Parker attends an adaptive PE class or physical therapy…..or when we (gasp!) venture out on a grand adventure……like say my parent’s house.

Picture me having to run after Parker with the oxygen bottle in tow a few feet away during adaptive PE classes. It isn’t pretty, people.   And what kid wants to be confined to a mere few feet when they finally get to paint the town red?

Imagine your entire life tethered to some kind of oxygen machine able to wander just 50 away.  Except for the time that you can only move a few feet away.

That’s Parker’s usual. Take one step too many and he winds up clothes lining himself as the slack between the oxygen bottle and his trach gives out. Not the smoothest of moves, iykwim.

With that in mind I decided to make some calls and see if between our private insurance and Parker’s waiver we might get a portable oxygen concentrator for him.  Easier than oxygen bottles.   Plugs into the wall or into the cigarette lighter of a car, light enough for this Mama of ‘advanced maternal age’ to drag along behind her.

I would have been better off spending the day banging my head against the wall.


Insurance Dude! Who do you actually think is buying that excuse?

I started out by calling our private insurance.  Nope. They won’t cover portable oxygen bottles.  The technology is still too new.  Uh.  Huh? Technology too new?   Do I really sound that naive over the phone?  Is there some blow off 101 course insurance reps are required to take that include lame excuses?  In my mind I’m seeing a note taped to the phone listing all the reasons to turn a family down.

After figuring out that I was serious about getting a portable oxygen concentrator my private insurance company told me that the best they MIGHT be able to do is to purchase one using their discount and then billing us monthly until it was paid off.  It’s not unusual for insurance companies to get a major price break when they purchase durable medical equipment.

This would work well, if our budget had room for a monthly payment.

I decide to move on to Plan B.

I asked if Parker’s waiver would pick up the cost of a portable concentrator.  Medicaid picks up the cost of Parker’s vent……our private insurance won’t.

No, I’m told Parker’s waiver will only pay the MONTHLY RENTAL fee for this concentrator.  Because of this our private insurance would have to be responsible to maintain it and track it…..cause you know a little note somewhere saying that it’s at Parker’s house is way too much effort.

Meh.   I figure that I’ll call Parker’s case worker and get the real story.  I wind up calling the Dept. of Health and Human services.  Sure enough.  Parker’s waiver would pay an ongoing RENTAL FEE, but not pay outright for a portable concentrator.

Because paying a never ending rental fee is so much cheaper than just covering  the one time cost of a portable concentrator outright.

Then I remember the extremely close relationship our private insurance and HHC have with Medicaid.  Hands in each other’s pockets kind of close.

It starts to make sense.

I remember how cheaply a Home Health Care company can get an oxygen tank…..and how freakin’ much they charge each time that oxygen bottle is refilled.

Providing portable oxygen concentrators would put an end to that gravy train, no?

Finally, it hits me.

We’ve been set up.

It’s not just us.  As I mentioned above, I have other friends who have been down this road just to find a big old ‘sorry, sucker’ at the end.

I’ll keep lugging the monster concentrator around.  I’ll continue running to keep up with Parker in order to  maintain that few feet of space between him and his life line.



This kid? Totally going to rule the world one day. Count on it.

Instead of being frustrated with a system that makes no sense,  I’ll focus on the blessing of having this kid’s footsteps to trot along in.


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