Avleigh's Journey

We pay lots of money on premiums, deductibles and out of pocket expenses for insurance. We, like many, are constantly battling insurance covering certain medical needs. We have been pretty lucky in most instances. They tend to approve most of Avleigh’s medical needs. The things that they decided not to cover we figured out ways of still meeting her needs. Whether is was using a line of credit for medical payment or finding a work around to still provide her care. You see, what most people don’t realize is insurance has a lot of fine print. They have doctors on their staff that will overrule her physicians plan of treatment because they don’t feel it is necessary. The biggest obstacles with this has been her formula and some of her medicines. I don’t understand how insurance can say that her formula is not medically necessary. It’s required for her to live! Not only that but this formula isn’t like the formula that you buy at Walmart for an infant. This is some expensive stuff! On the other hand… medicine. Her motility is literally starting to work backwards. Instead of everything flowing down through her system like it’s supposed to, hers shuffles its way back up. We’ve managed to get a handle on it by draining her stomach 12-14 hours a day and also having her a high dose of reflux meds (that insurance refuses to cover). Another medicine that they don’t see necessary to cover the liquid form is her one for her muscles. They don’t see anything wrong with her getting it in pill form. What is wrong with this picture??? She’s a child that can have nothing by mouth! How is this not medically necessary?

So with these work arounds we’ve come to a set back. Her muscle medicine that they say she doesn’t need the liquid form has landed us in the ER at Children’s because it has clogged her j-tube. Without that tube she has no medicine and no food. On this Memorial Day morning we were away from our family, sitting in the hospital waiting for radiology to squeeze us in to replace her tube. So to the insurance companies, if you would just provide services for what you are meant to provide you wouldn’t be paying for an ER visit. I just don’t understand how people in this world have gotten so self centered that they forget what’s the right thing to do for their own customers.