Entry 4

I spent most of the day yesterday on the phone with insurance companies. Every single thing about Percy is small, except for her medical bills, which are enormous. We’ve had trouble with our insurance ever since we started having miscarriages, and it’s been getting worse. The fact that Percy was born via surrogacy only added to the confusion. Originally our insurer refused to pay for any of Percy’s care; they claimed that our surrogate’s coverage should be charged instead. Since Percy is 100 percent ours genetically, Jessaca’s insurance company was understandably reluctant to assume the cost of her care.

After much prodding, my insurer agreed to pay for Percy’s bills, but only after the first 30 days of her life. It would take me 10 years at my current job to pay for the cost of one month of hospitalization in the NICU. With the help of a very understanding cashier here at the hospital, I think we’ve finally gotten our point across and extracted from the insurance company an agreement to do what they’re supposed to. Until I see all the paperwork (or until the bills come rolling directly to me) I have this unsettling feeling that our financial fate is dependent on the good graces of the insurance industry.

After the first 10 days of hospitalization, Percy had rung up charges of $380,000. And that doesn’t include the cost for the doctors, who bill separately. On her first day Percy got three doses of artificial surfactant, the viscous goo that keeps the air sacs in our lungs inflated. It’s a miracle drug, and Percy wouldn’t be doing nearly so well if she hadn’t gotten it, but each dose costs $3,500. When nobody you love is sick it’s easy to be dispassionate about the outlandish price of medical care and to debate the costs and benefits to society of fighting to save difficult patients. But when it’s your own daughter, you want all the big money spent. Similarly, yesterday I asked the doctor why, if most preemies get infections, shouldn’t they all be given antibiotics prohphylactically? He gave me a perfectly reasonable answer about the risks of creating drug-resistant superbugs. I’d like to be concerned about hypothetical future babies, but all I really care about is the immediate health of my own sick girl.

Our current insurance crisis involves the fact that my plan has a lifetime per-person maximum of $2 million, and I think we’re going to blow right past that over her projected three-month stay. I’d hate to make it through this ordeal only to leave Percy uninsured when she gets chickenpox in 10 years. I thought we could just switch Percy to an HMO with no maximum that my wife’s employer offers. But the insurance industry has a rule that children of two-plan parents must be covered by the parent whose birthday falls earliest in the year. Unfortunately that’s me. We considered ways for Percy to lose my coverage and get switched to Shona’s, but all of them—quitting my job, getting a divorce, faking my death—seemed unworkable. The other option is to switch to a no-maximum plan at my job, but it carries a $600 per month co-pay. They say that when Percy’s not in crisis anymore, when she’s just a feeder and a grower, that her bills will come down dramatically, and we may not ever reach the 2 million mark. But I’m left trying to weigh my current budget against future costs that are both entirely unpredictable and utterly critical.

In our thoughts about switching carriers, Shona and I have offered up so many odd variations that we’ve thoroughly confused the benefits people at our jobs. It’s also nearly impossible to get definitive answers out of the insurers themselves about what the various coverages will actually cover. Whichever course we choose will be essentially a guess, and we won’t know how deeply we’ve miscalculated until we reach our next unforeseen medical crisis in the years to come.

The good news amid all the hassle is that Percy’s feeling better. The Ceftazidime and Vancomycin have worked their (expensive) magic, and her infection levels are dropping. She’s up to 144 cc’s of milk a day, and when the nurses evacuate her stomach before every feeding, there’s nothing in there, a good sign that she’s learning to digest well. The nurse puts her in a little shirt for the first time, and it’s so big it looks like a wizard’s cape. She opens her eyes more and more, and she’s got this incredible little toothless smile that she puts on after she stretches and rubs her eyes. She’s seeming more and more like a real baby, and I can even start to imagine that one day she’ll be able to come home with us like a normal kid.

We’ll get this insurance stuff worked out somehow. I’m confident of that, though I’m not sure why. I just hate the fact that I have to spend a single ounce of my emotional energy worrying about this crap when I should be focusing exclusively on Percy. My lowest moments aren’t when we’re facing a new medical crisis, but when I’m on the phone with an idiot, or even with a well-intentioned lackey working under a bureaucratic mandate to value money over my daughter’s life. In the end I take a fair amount of glee in the fact that no matter how many years’ worth of premiums I pay, my family will always be a gigantic net loss for the insurance industry.