I am on a story kick this week. This is a friend's journey to diagnosis, treatment, and being an engaged, empowered advocate for her daughter's care. Like I always say, don't get in the way of a mom on a mission.
The last two and a half years have been a bit of a blur. And not just because we’ve been through four job changes and packed and unpacked our family of five’s belongings three times. In the midst of all that, our daughter has seen more medical professionals than I can count. She was born with a hearing loss caused by a virus she contracted in utero. And because of the nature of the virus and the complications it can cause, she’s been seen by practically every pediatric specialist in the two cities we’ve lived in. Otolaryngologist, audiologist, cardiologist, opthamologist, geneticist, developmental pediatrician, speech pathologist. She’s seen them all. She’s had x-rays, blood work, urinalysis, auditory brainstem response testing, audiograms, CT scans and MRIs. And she’s been dubbed an “enigma.” There are symptoms and results that don’t make sense and aren’t consistent, so the appointments will continue.
I’ve always considered myself pretty organized, but all these appointments and tests have resulted in a whole lot of paperwork. And all that paperwork has thrown together and shoved into boxes three times. It’s currently bound in an overstuffed binder, and being a busy mom of three and small business owner, I feel pretty accomplished if I can even get the more recent reports in the vicinity of the hundreds of other pages.
A friend had told me months ago about an app called CareSync, and while the idea of having everything organized in one place sounded very appealing, I brushed it off, because who in the world would have time to enter line items for a bajillion appointments?
Feeling frazzled with the onset of my daughter’s most recent troubling symptoms and scheduling an appointment with yet another new physician, I found myself thinking again about CareSync and how nice it would be to be able to present her entire history at once so the doctor could see the whole picture. It’s my busy time of year with work and each of the kids is involved in a sport and I’ve been barely keeping my head above water as it is, but I convinced myself I could find the time to rifle through the endless paperwork and enter all the results online. We’ve been faced with blank stares and near ridicule when we’ve tried to describe our concerns with our daughter in the past and have walked out with no answers and feeling crazy. And maybe we seemed crazy. Because the things we’ve described on our daughter’s behalf don’t make much sense. But with all her results and reports side by side, the picture becomes just a little bit clearer. And by being prepared and arming ourselves with her medical history in its entirety, we may gain some credibility. And with credibility, maybe we become even better advocates for our child. And maybe we’ll finally get some answers.
So, I created an account. And I was thrilled and relieved by how easy it was to navigate the site. I set everything up and was able to enter each provider in a snap. They were all in the site’s database, including contact information. And then I discovered something amazing. The answer to my question of who had time to enter the endless information. For a small fee, a CareSync Specialist would request all the records and input them all. I filled out the release of records forms and that was it. My work there was done. In less than half an hour.
I’m practically giddy at the prospect of being able to walk into this new provider’s office and whip out my phone and have immediate access to each of her audiograms - from two different states and three health systems. I can hardly wait to show him the report from the multidisciplinary workshop our daughter went through when we lived eight hours away. I’m anxious for her appointment, but in a good way this time.
This tool is life-changing for our family. I finally feel truly empowered when it comes to my daughter’s medical care. And that is absolutely priceless.