Life on a Tether:
Why Can’t Kids Get Portable Oxygen Concentrators?
There’s a law in California about tethering dogs. It reads as follows: “No person shall tether, fasten, chain, tie, or restrain a dog, or cause a dog to be tethered, fastened, chained, tied, or restrained, to a dog house, tree, fence, or any other stationary object.” Whenever I read that, I think about my child—and many children like her—who are constantly tethered to a stationary object, the oxygen concentrator.
Why is it illegal to tether a dog, but it is perfectly legal for uncooperative Durable Medical Equipment companies to force children to be tethered to their huge home oxygen concentrators because they refuse to provide portable concentrators?
My daughter has a lot of tethers. There’s the pulse ox, the two little backpacks with her IV pumps and bags, the Foley bag to drain her bladder, the two extension sets for her gastric drainage and medications, and the ventilator when she needs it. But none is more onerous than her oxygen concentrator.
She’s on oxygen 24 hours a day, and needs a fair amount—about two liters most of the time. Because we have an unsympathetic insurance company and a horrendous Durable Medical Equipment company, we are given few options for oxygen. 99% of the time she’s hooked up to the big, noisy concentrator at home. When she goes out, her company gives us the option of B, D, or E tanks. Liquid oxygen is not an option. And a portable concentrator? That’s a pipe dream I will probably still be fighting for until the day my child dies.
The B tanks last little more than an hour. The D tanks give us two to three. We don’t use the E tanks because they are taller than her wheelchair right now. So if we are going out for a day trip—say six hours—we need to schlep 3 D tanks with us. That’s 16 pounds of oxygen tanks! When she returns to school she will need 4 tanks—21 pounds!—of tanks each and every day. That’s 20 tanks a week. Just thinking about the storage for all those tanks makes me cranky.
Whenever I see one of those old people with a tiny portable concentrator, I get insanely jealous. Once I saw an old man with a portable concentrator SMOKING a cigarette. I had the insatiable urge to steal his concentrator.
Unfortunately, portable concentrators tend to be very expensive and difficult to get approved. The ones that run continuously, which tend to be the only ones kids can use, are even more expensive. Durable Medical Companies are not interested in passing them out, and buying one is prohibitive for almost all families since they cost more than $3000.
Every time I take a breath, I think of all the oxygen just floating around us and wonder why no one has managed to invent a portable concentrator that kids can use and that is cheap enough for purchase or rental. Really, how hard can it be?