Sunday, March 21, 2010

What it means to me...

As we sat in the PICU of The Children's Hospital in Denver when Max was four months old, a financial representative came in to visit with us. We had come in through the ER, and we were trying to get an idea of what this hospitalization was going to cost us.

We were day two into a 72 day stay that year. Not that we knew that at the time, but taht was how it turned out. We wanted to know what our insurance covered. Because, like many Americans, we never really paid that much attention to our plan. We never imagined we would need to utilize every benefit, and still come up short.

They had our baby hooked up to tubes upon tubes. Monitors buzzing and beeping. Hushed tones were used all around. He had been diagnosed two days before. Two days before that, he was just our baby...not a baby with a diagnosis.

They were talking a week or so in the PICU to stabilize him. Then brain surgery, not one...but two. Then there was the treatment for the metabolic disease that the pharmacy is flying in, and the other they were trying to formulate themselves. The biopsy that was sent to Canada, to confirm the metabolic disease. They were taking his blood daily...running test upon test to see if he was ready. If his body was responding. We had an MRI, xrays, EKG's, EEG's, sonograms of every vital organ...all within two days of being the PICU. He was intubated and in a medicine induced coma. They stopped the seizures, the 250+ a day we learned two days before he was having. And in a week they would bring him out to capture those seizures with a radioactive isotope to see where to perform the resection of his brain. We had the heads of neurology, metabolics/genetics, and neurosurgery in his room daily. If there was a student within reach, they came to learn about him. A patient so rare, he had to be seen.

All of these things were saving our son's life.

With all of the tests, and treatments, and heads of departments...we started to wonder...who was going to pay for all of this? How could we pay for all of this? And we really cared very little, because our main goal was to leave that hospital with our son alive.

We knew nothing of our insurance, other than we got by pretty good on the delivery of Max. $200 for a baby wasn't bad at all. We had "good" insurance. So when the financial representative came into our room, we were hoping it wouldn't be too terribly bad.

She asked Steve if he was "dad", and the holder of the policy. He said he was, and asked what she had found out. She looked at him seriously and said, "You can never quit or lose your job, you have exceptional insurance.". She went on to tell us how we have no lifetime cap. And everything will be covered for Max, except the $50 emergency room co-pay.

A month after the two brain surgeries, and a month in the PICU, we were sent home. Steve's company was shifting and re-organizing. In order to keep his job, he needed to move to California. So he did. Without us. To keep our insurance. We lived apart for six months so Max could continue seeing his doctors weekly here. He's worked hard, with his head down for six and a half years, to heed the advice of that financial representative. He's changed positions, traveled, and moved again to keep that magical insurance. A leash...a ball and chain...a life-line.

Don't ever lose your insurance.

And not that we intend for him to lose his job...or that we intend to start shopping around for something different...but tonight, he and I exhaled a breath that has been held in since we met that lady in the PICU six and a half years ago.

Tonight, when they voted for healthcare reform, "Don't ever lose your insurance" has turned into...finally..."If it does happen...he'll be okay."

We will be okay.

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