Wednesday, October 5, 2011

On Being Prepared

My wife had a great idea.  After dozens of visits with disciplines and disciplines of doctors, she told me it was her intention to write down Lily's medical history in narrative form so that we'd have the information for the next few dozen doctors, so we wouldn't have to regurgitate it/reinvent it.  I thought, "great idea!"  She wrote it out over the course of several days, calling me periodically at work with questions like, "when Dr. X saw Lily, was that before or after we went on vacation to Nagshead that Summer?" , or "How old was Lily when the daycare called us and the ambulance had to be called", and other such adventures.

It was a good exercise, and surprised us both with the amount of information not only that she had collected, but also that we had forgotten over the course of her writing it.  In the 'end', she came up with a document that was five single-spaced pages long and covered a myriad of topics, blood sugar, allergies, genetics, etc.  There was all kinds of information in it. 

Alright, doc, where do you want this?

Not that this is a good analogy, but my parents bought the audio books for the entire Harry Potter series.  They would loan it to us every time a new book or movie came out, and we would listen to the entire series on our work commutes before going to the movie, or reading the new book.  We found that every time we listened to the series again we had forgotten huge chunks of it every time.  Little things here and there sometimes. . . but also things that were important to the plot of the story.  And that was just six months to a year at a time (depending on whether it was a book or a movie, or both). 

This was the first five years of the kiddo's life.  And, as she would be in mid-story regarding something in Lily's history, it would tickle our memories about something else, or perhaps fail to tickle them, as our memories are getting worse and worse the older we get.  Or mine is.  Hers still seems fine.

So we finally had an opportunity to put the new narrative to good use.  We were looking at a new local doctor and wanted him to act as Lily's pediatrician.  He specialized in kids with autism.  So we printed out the narrative, backed it up with medical reports, and got them to the doctor.

He didn't read them.  Instead he asked the same exact questions all the other doctors asked, and wrote them himself on a laptop while our autistic daughter with ADHD sat as quietly as she was able. . . for four fucking hours.  This is a doctor who specializes in kids on the spectrum. 

One of Lily's TSS's was with us, and Lily was a trooper throughout.  It's only now, after the fact, that I'm getting sort of irritated thinking about that.  Should he, a doctor specializing in the pediatric treatment of children on the spectrum been a "hair" more supportive/understanding of Lily's frame of mind?  Regardless that's beside the point.  The point is. . . while he was busy ignoring our narrative and all the doctor's/medical reports we brought with us, he was asking us questions whose answers should have been located in the paper pushed aside to make room for his laptop. . . but they weren't.  It was like Harry Potter all over again.  The information should have been there, but some of it wasn't, because it was just something we'd forgotten to add.

The point of writing the blog was not to point out how old and absent-minded I'm getting though, the point was to highlight the difference between theory and practice in "being prepared".  Let me bring it back to that.  In practice, the narrative worked and provided some limited utility because, while the doctor didn't actually read it, my wife and I did lean on it to answer several questions he asked.  When he'd ask how old Lily was when she had eye surgery, for example, my wife would thumb through it until she reached "Vision" and read through to find the answer.  We'd never have been able to "bare-brain" that sort of thing combined with all the other questions he asked.  Maybe we'd have dug it out over the course of the appointment, but it would have been a six hour meeting instead of only four.

In theory, we give the narrative to the doctor.  He reads it, writes down his findings, and we have a 15 minute appointment.  In practice, the doctor ignores the narrative and makes us do all the same crap the previous two dozen doctors did while Lily spins further and further out of control and we have a four hour appointment.

I'm still very hopeful that this doctor can better direct Lily's care than her previous pediatrician, but
 it is a little disheartening that an "expert" in caring for autistic kids does nothing to plan for Lily's appointment, ignoring the steps we took to fast-track/ease the transition, and plods along asking us questions that are answered by the documents we placed beneath his very fingertips.  I get that his time is valuable.  We thought ours was too, but I suppose being put on an 18 month waiting list should have established the relative value in question beyond a shadow of a doubt. 

We answered his questions, and some of them even highlighted some holes in the documentation we provided.  He got the information he wanted/needed in order to guide Lily's care appropriately.  We learned that we probably need to return to that document and gussy it up a bit.  Not that anyone will look at it but us. . . but still.


  1. Four hours?! No wonder there is an 18 month waiting list. I think what your wife did to prepare was wonderful and thoughtful. I guess I can see how the doc wants what he wants and wants you to tell him orally instead of reading it. But as you say that you referred to it to answer questions you are way ahead of me when I go to an appointment and try to guesstimate when this or that happened.

    I hope the new doc is helpful for Lily and I would definitely keep doing what you are doing because it's helped. Maybe not in the way you planned but it still did and that's all that counts.

  2. Yeah, I mean ultimately it's helping US. And maybe it was never reasonable to assume that a doctor would sit and wade through 5 pages of single-spaced stuff that parents put together. Especially THIS doctor, with his waiting list and jillions of patients. . . but you're right, it has provided help in some way, though that help might not have been what we thought it would be when she wrote it up.

  3. I took all of Little Bird's records, med reports, etc and scanned them into my computer so I could burn everything on to a disc anytime I see someone new (hasn't happened in a while, but still good to have).

    Good luck!

    Your wife is brilliant, by the way. (agree with me)

  4. I try to do that stuff too. All her IEP's and evals are scanned, along with dx. And because the iphone recognizes pdf's as "ibooks" i can store them in my iphone's bookshelf. Pretty handy.

    She *is* brilliant and I would doubtless say that even if I wasn't positive that she'd eventually see this comment. ;)

  5. I started a medical journal way back when my son was diagnosed with dyspraxia (a motor coordination disorder), epilepsy, and delays etc, but I just couldn't keep up with it, and now have a box full of files, reports, xray/ultrasound copies (he had kidney issues birth to age 4.5), etc. I hadn't even thought about updating that into a TYPED document, let alone scanning everything onto a disk! This might just be the push I need to get updated, so thanks! I will get on that right away, just after I get through the 527 loads of laundry, dishes, studying, and school paperwork piles that having 4 kids creates... :)

  6. 4?? Yeah that seems like a LOT to bite off. Good luck. I don't envy you your laundry!