“You’re close enough, you could drive there,” she said.

 So nine years ago, at the suggestion of doctor that I met only once, I made the choice to repeatedly make the six hour drive to Chicago to one of the nation’s top pediatric neurologists and epileptologists. However, this is not the norm among parents of chronically ill children…and even though my son’s condition continued to worsen, my choice to seek outside help was considered radical. There was a feeling that I was a prima dona…local physicians were not good enough for me…I had to have a fancy city doctor… I stopped going to support groups. I mean, seriously, who needs that type of support?

I have never regretted my decision to seek excellence in healthcare. Never.

This decision truly saved us from an uncertain and frightening future. But nothing lasts forever. And after years of treatments, setbacks, successes and a life-saving brain surgery,  my Chicago doctor joined a California hospital. Thankfully, we were invited to transfer with him into his new practice. It’s still about six hours…just by a different form of transportation. And even though I have flown this route ten or more times now, I never start the journey without a sense of fear. Fear that we won’t make it there…fear that we will have a layover and run out of medicine…fear that I have not packed enough special food for my son’s seizure control diet…fear that my non-verbal son will get lost or separated from me…fear that this time they won’t accept my out of state insurance…fear that we will be ridiculed by strangers. Stupid things, I know…but some of them have happened.

But, I have figured out ways to make it work…like what to pack, how to go through TSA security safely with a child with disabilities, and how to make friends to help us along the way. And I realize now that what we were doing was innovative. So before technology was an established part of medical practices, my physician used out patient EEG services,  phone calls, faxes, and e-mail as ways to cut costs, stay connected, and improve service. This was nine years ago… way before it was cool to be techno-savvy and practice distance medicine.

And we found that there are little things that make it work better.

As a patient, I learned what my physician needed of me…things like remembering to draw labs-as a trough- before my appointment and fax them to his office. Or things like learning to coordinate with the local pediatrician so that we all learned to work and play well together…as a care team. And learning to be a good observer and an accurate reporter. When working at a distance, you are the eyes and ears of your doctor. And its important to establish a high level of trust and accountability…on the part of both of you. And when it works…it really works.

You become a team…a care team. Equal partners with a common goal. A shared vision.

I came to realize that the quality of a doctor patient relationship is not measured by your proximity to the clinic but by your trust and this shared vision. For my part, I needed to prove that I was sincere and worthy of this responsibility. My physician had to have the faith to know that I would do exactly what needed to be done…whether I liked it or not. And truthfully, often I did not…but I did it, precisely according to directions, and he knew he could count on that. Always.

Looking back, its hard to believe it has been nearly nine years.

I know that finding the absolute best physician and building a rock solid bond of trust and mutual respect saved my child’s life. But it was not obvious at the time. It was a shaky faith built on fear and desperation that eventually lead to trust and admiration. And the knowledge that as a care team we did what neither of us could have done alone…saved the life of one child. One child who will never know how close he came to death…but was saved through the faith of two people, a patient and a physician, acting as one.