This Thursday is the third time we will be going back to the (very well-known and well-regarded) hospital for a neurodevelopmental evaluation for Malachi. It is where they will poke and prod him and detail what's wrong with him — but for all that somehow not be able to tell us much of anything about his condition and what it will mean into the future.
The first two such appointments we had there were, in my opinion, absolute disasters. The first was on Sept. 22, a date that is etched into my memory. We were told of Malachi's brain injury in early July and given the Sept. 22 appointment for the neurodevelopmental clinic. For the nearly three intervening months I grieved — hard — and did little to no research on cerebral palsy or treatment options. I gave myself until that appointment to process it. Then, I would finally hear from our team of world-class doctors and therapists some sort of action plan for what we would do about this major and well-known condition.
Nope. Not even a little bit.
The kind but bizarrely unintelligible developmental pediatrician told us next to nothing about what we should expect — except that we couldn't expect anything. He did a series of tests on Malachi but told us nothing about what they were and what they meant. Much, much worse, in my opinion, is that he had a "wait and see" attitude and assigned us physical therapy ONCE A MONTH starting in late October. Are you kidding me??? You get more physical therapy than that for a sprained ankle! Not to mention brain scientists, teachers, and, well, EVERYBODY, knows that if you want to learn something —walking, reading, anything — you need to practice as much as possible!
It was then I realized that I had wasted priceless, irreplaceable time on a medical system that was calibrated to be extremely inefficient at helping a baby recover from a brain injury. Babies — especially babies, whose brains have the unique ability to rewire around damage — need help as soon as possible. Not four months after the brain damage is detected.
I struck out on my own and explored and tried as many alternative therapies as we could, but I felt ill-equipped and betrayed by a medical system that did little more than shove me through an obstacle course.
We changed developmental pediatricians, but our next appointment in March was probably worse. Not to mention, when I tried to make a follow-up appointment for four months later as the doctor recommended, the earliest option was late-August. Two extra months is a LIFETIME in a baby's development.
So, that brings us to this Thursday. I really, really don't want to go for several reasons, but I'm going to, because it's what I do.
Because these specialists are much too busy to see patients in a logical fashion, the appointment is SIX hours long, most of which will be spent waiting. Malachi — like all babies his age — sleeps for a couple hours in the middle of the day. I will not be at all surprised if his noon nap time is when they decide to perform their most strenuous tests and remark that he is easily irritable and stiff. (Woah.)
Also, I will be alone. No one, not even my husband, is available to come with me, although thankfully Jaden can stay with his grandpa so I won't have to wrestle him, too.
That's when I thought of this blog and you guys, my awesome readers, who have made my life so much better since I started blogging. I realized, "I don't have to do this alone."
I've decided to live-tweet the appointment with the hashtag #thepatientexperience. I want everyone to know how frustrating, demoralizing, disempowering and just plain backwards the conventional American medical system has become when it comes to caring for unique needs of its patients. The appointments patients go to are far more often suited to the comfort of the medical staff than to the health and wellbeing of the patient.... the latter being, if I'm not mistaken, THE ENTIRE POINT OF THE MEDICAL SYSTEM.
My hope is that this will turn what is sure to be a stressful and depressing day into a learning experience for everyone, most of all medical professionals who no doubt got into their career to help people, not stress them out and hinder their healing process. Perhaps if they can see it from the patient's perspective they can work to change their clinics and workflows to be more patient-friendly.
Follow me on Twitter to catch the action. Also, feel free to use #thepatientexperience to document your own appointments and the ironic, counter-intuitive things our "healers" make us do.
I really believe that change can come through our words.
P.S. If you don't have Twitter, that's OK. I'll post a recap here that evening or as soon as I can.