Asthma? ATTACK!

Having a disabled child is difficult every day. Many people assume the emotional burden and sadness make it tough. Those are there, but after a year or so, it wanes and just becomes part of the fabric of your life. They rise up periodically, especially in times of crisis. For the most part, though, the day-to –day difficulties are much more practical than emotional.

I deal with several government agencies, three different medical supply companies, the pharmacy, the nurses, dozens of doctors, the school district, the bus company, and the health insurance. It is not every single one every day, but at least a couple every day, and more often three or four. I have it pretty much down to a science. If everyone does his or her job, things flow smoothly. (That is a BIG if) It is a ton of work and it takes a ton of time. I do not mind doing it, but I go a little crazy when one of these multiple entities does something stupid. Saturday was one of those days.

Saturday afternoon Maggie and I were dancing in the living room to the music we have amassed for her birthday party. We were having fun and laughing. Then the health insurance company called. That is unusual for a Saturday. The guy asked to speak with Maggie and I simply said, “I’m her mother, can I help you?” His perky reply, “Oh, right, she’s a minor” [I didn’t even bother to tell him she was also non-verbal]

He was calling to tell us that we qualified for a FREE service from the insurance company. I stopped him and asked if this was the case management situation. I would welcome that if it worked, but each of our health insurers over the years has appointed a case manager that either doesn’t manage, is unreachable, or, in one case, repeatedly told me to sit down and have a cup of tea because I ‘had to take care of mom, too’. I do not want TEA; I want approval for a procedure.

He assured me it was not that, but thought this was something that could really help us. Ok, I’m listening. He said, with a voice filled with pity and concern,” I understand your daughter was diagnosed with asthma.” (His voice turned very serious as he emphasized the word “asthma”)

“Asthma? You are calling me about asthma? Are you kidding me?”

For the record, you should be aware that Maggie does not have asthma in the conventional sense. That can be life threatening and scary and I am not in any way diminishing the potential seriousness of that condition. Technically, Maggie may be considered asthmatic, she is on multiple respiratory drugs that are often used for asthma; but it is just a small part of what we deal with hundreds of times every day.

The poor guy was obviously taken aback at my reaction, and I am sure he thought I was a crazy unconcerned mother. He was half-right. His voice was a bit chiding now: "Ma’am we have a program that will help your daughter care for her asthma.”

I was exasperated, but not toward him. I simply said, “Look. My daughter has about 500 things wrong with her and the asthma is number 497. We have that well under control. My daughter needs total care 24 hours a day. Do you have any programs for cerebral palsy, hydrocephalus, getting tracheostomy supplies, or feeding tubes or catheters, or nursing services?

Ok, maybe a little toward him. Please keep in mind, he called me, to push a product, I did not call him seeking assistance.

There was a pause. The guy asked if she was under the care of a nurse and I said yes, all day and all night every day. Of course, the insurance company does not cover that, so it’s as though it doesn’t exist in their world. He said he would take her name off the list so that I do not receive several more calls about it. That is a good thing, unless the other conditions she has are handled through other offices.

I hung up the phone and just said aloud “That is ridiculous.” My husband asked what happened and when I told him he laughed and said, “Poor guy, he never had a chance.”

I did not find that as amusing as my husband did.

I am sure Maggie’s meds triggered her eligibility for this program and no one ever considered anything else about her. That’s par for the course. Maggie’s complicated care is tangled in this web system of care; she has many people monitoring her from every angle. However, no one knows the whole picture. Except me. That bugs me – a lot. Especially when the insurance company, which is footing the bill for many of these things, seemingly uses an alphabet soup approach to case management. Asthma is just the first of Maggie’s condition alphabetically. I guess they don’t care about her apnea. Next week they’ll call about her bladder infections.

I’ll let my husband answer the phone and Maggie and I will keep dancing.