In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious.

I am furious with myself as much as with any physician. These clues were there for the doctors of Patient #1838472401057 (not her real number), but the clues were also there for her parents. In those early years, though I pushed back occasionally, I seldom questioned a diagnosis, a prescription, or a procedure. I didn’t ask to see the results.

This is not how it has to be.

Electronic charting is a reality in most major hospitals now. While there is a limit to the amount of information you can get in those reports, there’s enough in my daughter’s online medical history that I can piece together the puzzle in reverse. Two years of healthy, thriving growth that I can see, touch, and hold each day tell me that I am right: this was the solution we had been seeking the whole time.

If you are reading this because your child has strange medical symptoms that the doctors cannot treat, because your child has a diagnosis you don’t feel is correct, because something about the way your child responds to standard protocols seems off to you: you might be right.

Read. Read the charts, read the test results, read the notes. Look up the words you don’t know, and read some more about those words.

Ask questions. Find out what might happen next, find out what happened already that they didn’t share because they didn’t feel it was relevant. Ask why: why this thing, why now, why not another thing?

Push. Push the advance practice nurses, the regular nurses, the radiology techs and the dietitians and the doctors who will spend more than a minute with you.

I wish I had read, asked, pushed, earlier and harder and more. I didn’t, and my daughter suffered for years longer than she would have if I had done those things from the very beginning of her medical mystery.

She’s ten now, my daughter made more precious to me by my fear for years that she was with us on borrowed time. She’s ten and healthy, ten and strong, ten and forever changed by all she went though while I waited for someone in a white coat with hundreds of other patients to care about her as much as I did.

Don’t wait. Read. Ask questions. Push.

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