Tuesday, August 23, 2011

The Patient Experience: Liveblogging a neurodevelopmental evaluation

This Thursday is a day I'm very much dreading.

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.

9 comments:

  1. The waiting game has been the worst part for me. It's been two months since my pediatrician told me she was pretty sure my daughter Reagan had CP. We are still yet to meet with her specialist to help confirm or deny this information. I called a ridiculous amount of doctors, and some had waiting lists until June 2012! I had this bomb dropped on me, and no one would help put my mind at ease, or give me a plan of action. We finally have our first appointment with a psychologist on Monday. I've been beating myself up for months. This waiting game is almost worse than any diagnosis they could give. At this point, I just want to help make her life easier, and take the next steps to help her advance physically. My heart goes out to you, and hope your appointment goes well on Thursday. You will definitely be in our thoughts!

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  2. YES. The waiting game is the worst part. Katy, I really, really encourage you to research treatment options and alternative therapies. Please don't put your stock in conventional docs as they will underwhelm you. Please read my list of cerebral palsy books to get a head start and see if there is a Feldenkrais/Anat Baniel Method practitioner in your area. This method is what we have had the most luck with.
    Thanks for your well wishes.

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  3. Shasta
    I definitely think this is a GREAT idea. And my wish is that you will have a day with respect and insights into Malachi's condition. Be balanced in your editing...and I think it will be insightful for the medical community to see your experience.

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  4. I'm interested to see how it goes - although I'm too lazy to twitter (or is it tweet, or whatever it is). I will say that I think we have been extremely lucky with our doctors - obviously, our injury was different, so we did start with intensive rehab inpatient, but it was still a waiting game, although the need for therapy was obvious. And our doctors, they know us and I can contact them any time. And I believe we have built an amazing team who will advocate for us with other doctors. I don't know how it happened that we got so lucky, but we did, and I'm thankful, because I see other parents navigate without this, and it's awful. I hope your experience improves soon, though.

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  5. I know the medical system here in Canada all to well, since being diagnosed with my disease. I feel all your frustration with doctors and the system. I will be following you on both twitter and your site. I'm glad I found your site!

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  6. Hey Shasta! Wanted to wish you good luck tomorrow and I hope the appt goes a little better this time. It is so frustrating when they schedule major appts like this while kids usually nap and then they expect them to perform. Good grief. I will be thinking of you tomorrow.

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  7. Good luck tomorrow. Hope you get good news, or at the very least, status quo news and that they don't throw anything at you that you didn't already know or suspect. And hopefully the parts of the test that *don't* require him to perform will be scheduled during nap time!

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  8. Even more frustating to me is that all the alternative therapies we have tried have not been a much better experience either. My husband does not always get it. He does not get to go to very many appointments. I always feel so trapped and vulnerable- just waiting for another blow.

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  9. Oh really? I've found alternative therapists vastly more caring and accommodating, but part of that may just be that they are much smaller offices. I'm sorry to hear you've had bad experiences.

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