From the beginning, one thing that surprised me was the paperwork. For an industry filled with so many intelligent people, the bureaucracy is incredible. And one striking example is the medical history.
In Gabriella’s first three years, we spent a lot of time in hospitals. Sometimes we scheduled the appointments in advance, as for her many surgeries; other times, we rushed her to the ER. In every case, a resident or a med student met us with a clipboard.
“Can I ask you a few questions?”
They inquired about her diagnosis (or lack thereof) and the different ways her condition manifested itself. As a physician assistant, Lisa is comfortable with the language, and she would list them out – bilateral hip dislocation, hypotonia, osteopenia – and I would nod and pretend I remembered what those words meant. The resident would dutifully scribble on his pad, a kid younger than us, and I would wonder whether he knew either.
Then he’d move on to medicines, prior hospitalizations, surgeries, allergies (even I had this one after a while: “Lamictal. Yes, only lamictal.”). Luckily, they never asked me what lamictal was.
They would ask about Gabriella’s doctors. “What does she see her for? Do you have a phone number?” At last the resident smiled and nodded, and off he went.
A few hours later, another young person in scrubs would come in with a yellow pad. “Can I ask you a few questions?” Again? It didn’t matter that we pointed out that the medical student had gathered answers to all the same questions. She was just doing her job. With a regretful face, she would sit and inquire after the diagnosis.
As the hospitalizations piled up and the process became more wearying, there was also more to talk about. More surgeries, more pediatric specialists, more meds, more more.
One day, driving home after another stay, exhausted and complaining about the interns and nurses and med students with their legal pads, Lisa said, “What if we just printed out a copy of her medical history?” And that’s what we did. We’ve maintained both a detailed version and a one-page summary for nearly twenty years, including:
- Diagnosis – while Gabriella has an undiagnosed genetic syndrome, we include the many manifestations of her condition
- Past Hospitalizations and Surgical History (organized sequentially with dates) – hospital, doctor(s), reason
- Test Results – sleep studies, upper GI endoscopies, overnight oximetry study, etc. – again, date and location and relevant practitioners
- Current Meds – including current dosage for each
- Allergies and Sensitivities – not only the allergy to lamictal (still the only one), but her difficult airway
- MD List – specialty, address, office phone number
Lisa takes it one step further by keeping what is essentially a medical chart, a notebook capturing the salient points for every one of Gabriella’s medical appointments, supplemented by a detailed seizure log. That becomes the source of updated information in the medical history.
We recommend to others who make frequent hospital visits (whether for a child, an aging parent or themselves) that they document the medical history in a similar fashion.
Now when the young person in scrubs peeks into our room and says, “Can I ask you a few questions?” we reach into Gabriella’s bag and produce the medical history. “Oh!” they say. After a quick scan, they dash off to enter the relevant information into their system.
I don’t know who’s happier, them or us.