Heart and Mind and Coffee

My whole life I’ve hated coffee. I drank it once in my 20s. I went to a summer festival on the Lake Michigan lakefront with my parents. The weather—as it is known to do in the Midwest—rapidly changed to chilly temperatures. My mom bought a cup of coffee for me so I could stay warm. It was awful. I haven’t had it since—well, until a few weeks ago.

You see, there’s a lot going on. More so than usual. And coffee has found its way into my life like the friend I once had a falling out with. It’s come in the form of double espressos, lattes, and macchiatos, and has forged quite a nice friendship with me during my time of need.

There are a number of issues with Zane lately.

Neuro: We’ve increased his seizure medication, which has tamped down the repetitive patterned behavior. But…the behavior's still there. We have a little more wiggle room with the drug before he has to go to the hospital.

Cardio: Zane went to his cardiology checkup. New cardiologist. They broke some news to me: the Denver cardiologist missed a second heart anomaly. An ASD (atrial septal defect). A hole in the heart that allows blood to flow from the left atrium into the right. This increases the amount of blood that flows toward the lungs. Zane’s new cardiologist could hear this murmur with his stethoscope, so it is quite concerning that the Denver doctor told me a few years back that the ASD had closed. Down the line, this could cause an aneurysm. So it is yet another thing Zane has to be followed for throughout his life.

Insurance: In a nutshell, Zane’s audiologist had me sign a form at his appointment, stating it would allow his insurance to pay for the repair of his hearing aides, one of which is broken. And that it will do. However, what she failed to tell me is that by signing the form I’ve altered his insurance plan—likely in a significant way. I had to find out about it through the orthopedist’s office. They called to ask if Zane’s insurance had changed and, if it did, he would no longer be seen in the office.

I have wasted spent countless hours on the phone, trying to weed through the bureaucratic mess. At this point, I almost have been pushed to my limits with the insurance company and the caseworker and the audiologist and the mixed information I am receiving. So I am already in my paralegal mode, prepared to fight and fight hard. I have worked way too diligently over the past five months to establish care for Zane in our new place of residence. Anyone who tries to undermine my work is in my line of fire. Never mind that the audiologist misrepresented the form (perhaps through her own ignorance). BTW, disenrolling him from the program means will we have to pay for all audiology and ENT services out of pocket. Don't quite understand how that is legal, but we'll see. 

I’ve written many insurance appeals in the past—both for myself and for Zane. I have won them all. When I’m right, I do not give up. Ever. Perseverance is my key trait. And my paralegal background doesn't hurt either. 

So when I know more, I will post more. I’m hoping to receive some clear and direct answers today from a patient advocate, and I’ll go from there.

With that said, I’m off to drink another cup of coffee.