Health Care Hassles

Oh, for the innocent days, before I knew that croup was not an old wives’ tale. For the days before the wheezing in the middle of the night—the stridor breathing in between each cry—made my blood run cold. For the days before I knew about pulsox and oxygen sats, floppy airways and bronchiolitis, and the increased mortality rate associated with intubation. Before the word “intubate” entered my vocabulary, for that matter. Before I knew what it meant when an ICU room fills up with people.

It’s not what it sounds like. Not yet, anyway. No, at this moment Alex is at preschool and Julianna is in the basement singing and beating on a drum. Perfectly happy. But last night was Night One of the croup, and we’re already on the phone with doctors and nurses. Put this into the category Playing It Safe. May was really, really rough. For those who weren’t with us then, here, here, and here are some representative posts.

But in September, I overreacted.  So now I’m trying, once again, to find a balance.

At this point, our family has more experience with health care than most—at least, from the standpoint of the consumer. For all the noise in Washington about health care reform, there’s a piece of this puzzle that is not being talked about, and that is health care providers.

I have no problem with the $45-80,000 that gets billed whenever Julianna goes on a ventilator and sits in the P-ICU for two weeks. None whatsoever.

What I do have a problem with is the fact that we can never, and I mean NEVER, call our family doctor and get an appointment when someone is sick. All the appointments are taken up by pointless “well child checks,” which, outside of the vaccinations and a weight check, tell me absolutely nothing; and other non-essential medical appointments.

What I do have a problem with is the fact that if I call because of excruciating pain in my hips while pregnant, I have to wait a week for an appointment. If I call because I have excruciating pain while nursing—which, incidentally, I’ve put up with for two weeks to see if I could treat it with ibuprofin—I have to wait over the weekend, unless I get super lucky and they “overbook” with the nurse who specializes in breastfeeding issues. (Yes, I did luck out on that one.) If my child, who has Down’s, and has been hospitalized four times for upper respiratory distress, develops a wheeze, they might be able to squeeze me in with some resident, nine out of ten of whom have no clue what is going on.

Because I have no choice, I take whatever I can get, only to wait for two hours in an exam room while all three children scream, shriek, and otherwise shred my nerves, while the doctor is occupied doing who the heck knows what, and then comes in for two minutes, with nothing more than a perfunctory apology, to tell me to come back tomorrow and do the whole thing over again! And then, they get to bill hundreds of dollars for the privilege of having done ABSOLUTELY NOTHING while making my life ABSOLUTELY MISERABLE. And we tolerate this because??????

My point is that yes, health insurance is a problem that needs addressing. But part of the problem is on the providers’ end. We’ve met a lot of doctors in the last 2 ½ years. Some of them are truly stellar physicians, who go above and beyond the call of duty. Our family practice doctor, for starters. My OB. The heart surgeon in St. Louis, and every P-ICU staff member we’ve ever met.

But we’ve also experienced many physicians who provide terrible service. A geneticist who watched me nurse and then told me to prepare myself that Julianna would never nurse. Who then wrote up a “report” on what he “observed” about my daughter—including a stereotypical Down’s symptom that Julianna simply does not have. A hearing clinic that bumped us to the end of the line four times at the last minute, with no explanation, justification, or apology—meaning that we lived with the fear that Julianna had hearing problems for five months after we called for an appointment.

No other industry works that way. This one shouldn’t, either.