On my lunch break today I drove out to the medical supply store to pick up a nebulizer kit for Namine. This is the sad story of why I came back empty-handed, and more!

Namine used to have a nebulizer. She still does, but she used to, too. She doesn’t didn’t need it anymore, not since her pulmonologist prescribed inhalers in its stead. I knew we kept the nebulizer machine up in her closet, along with tubing and a mask. I thought we had also kept a neb kit or two around, just in case, but neither Jessica nor I could find one.

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We have the medicine, but not the kit (into which the liquid medicine is poured in order to be nebulized), so we needed to get one from our medical supplier. We used to get deliveries, both scheduled and emergent, from them all the time – oxygen tanks, tracheostomy suction machines, pulse oximeters, feeding pumps – but those days are gone. Now, the only piece of medical equipment we have in the apartment is the pulse oximeter (pulseox for short), and it hasn’t needed to be replaced in some time. The supply store was closed over the weekend, so I paid them a visit during my lunch hour. It did not go well.

Due to this crazy snowstorm (another one? come on), it took me nearly 40 minutes to travel all of five, maybe six miles. Ridiculous. When I got there, however, I found that they had no computer system.

To be more precise, their computer system had gone down shortly before my arrival. Ten, maybe fifteen minutes prior. It was for this reason that they could not look up any information on Namine – not her name, medical records, not even insurance information. They told me I was welcome to buy the kit, but that would never have been an option.

Because Namine will always be disabled, she will always have state insurance. Between my work’s private insurance (which, thanks to ObamaCare, can no longer deny Namine coverage) and Namine’s state insurance, we no longer should ever have to pay for her medication or equipment.

Put down your different-abled pitchforks and torches. As far as the state is concerned, she's just plain ol' "disabled."
Put down your different-abled pitchforks and torches. As far as the state is concerned, she’s just plain ol’ “disabled.”

But believe me, it’s not as wonderful as it sounds. Sometimes my private insurance will deny payment on something for Namine. For reasons anywhere between “we prefer she use something cheaper” to flat-out “we just won’t pay for that,” it tends to cause a ripple effect. Because my private insurance will stonewall a prescription, the state will balk as well. It sometimes takes days to get a doctor’s prior authorization to go through for a prescription.

Keeping all that potential difficulty in mind, it would be easier sometimes to just buy something, right? Well, you would be right. Except for one reason: it would set a precedent. It would tell the state that Namine’s parents can just buy her medication, or equipment, or supplies. Therefore, there would be no reason for the state to spend precious dollars on Namine’s medical supplies, effectively cutting her off from state support. There’s no guarantee that this would happen, but the possibility is there. So we don’t dare risk it, and we never buy what the state can provide, no matter how much of a headache it can be.

I want to be especially clear. Not a cent of our own is ever spent on anything for Namine’s medical needs. If we spend five dollars on medicine for her, it is the same in the state’s eyes as if we would have spent five hundred. So nothing out-of-pocket is ever spent on anything for Namine – not even her prescription of milk of magnesia, which is easily obtained over the counter.

State insurance is a pain, but it’s preferential to how things were before. Namine didn’t have state insurance until she was six months old; prior to that, we did have to buy everything out-of-pocket. It was for that reason that our church held a benefit dinner as a fund-raiser, so that we could afford not only her medicine and supplies when she came home from the hospital, but also basic amenities like rent and car payments.

So anyway, back to the present. I’m at the medical supply store, their computers are down, and the guy behind the counter is asking me if I just want to buy the neb kit. Now you know why I said no, why I didn’t even ask how much it would have cost me. No, instead I simply left my cell, Jessica’s cell, and my work number. “Call me as soon as you run her insurance through,” I said. I knew the order was already there, and I knew that in all likelihood we would encounter no problems. Scratch that – the only problem that existed was the fact that they would close at 5:00 and I wouldn’t even be done with work until 5:30.

Jessica has a car, but I wouldn’t have asked her to go out into this snowstorm. Aside from that, both she and Namine are sick. They seem to have gotten worse since yesterday, with Jessica losing her voice and Namine coughing more than ever.

Whenever Jessica loses her voice, she sounds like Invader Zim. I always make her say "Come to meee, my filthies!" It's hilarious.
Whenever Jessica loses her voice, she sounds like Invader Zim. I always make her say “Come to meee, my filthies!” It’s hilarious.

The only alternative was to ask my mom to go pick up the neb kit or wait until tomorrow when it would be delivered to our apartment, since they refused to stay open a minute past 5:00. I asked. Several times. They also refused to call me back. Okay, I don’t know that for sure, but after I got out of a meeting this afternoon, I called them. “Oh yeah,” the guy on the other end of the line said. “Our computers just came back up. I was just about to call you.”

Riiight.

So my mom left for the supply store, but with the roads as unplowed and treacherous as they were, she had to drive slowly. While she was en route, I called the store again. “My mom is on her way to pick up the neb kit,” I said, “but I can’t say for sure that she’ll arrive before 5:00. Will you please stay open until she gets there?” They refused. I had to bite my tongue – literally – before I said something unsavory. I just had to wait. Fortunately, my mom did arrive before 5:00. She called me at 4:55 to tell me that she had the neb kit, but boy were those employees crabby.

Well, they did have to put up with me for several phone calls. I guess that would put anyone on edge.

So tonight, I had Namine do her nebulizer treatment. At first, she protested. “But Daddy, I’m not a baby and I don’t have a trache anymore!” I explained that it wasn’t just for trached kids, that it was for her infection. She certainly understood about her cough and how she needed to be rid of it, so she took charge admirably.

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  • Michele

    I’m glad I made it there on time. The woman who waited on me was sure sarcastic to me, tho. I actually think I may call & complain & I don’t usually do that. I wanted to say,”what’s your problem? You’re not the one who just drove 45 minutes on unplowed roads to go only 4 miles!” But I didn’t. I’m just glad I was able to get my sweet Namine what she needed. I would drive thru a blizzard for her any day!