When the Textbook Doesn’t Explain the Patient

When the Textbook Doesn’t Explain the Patient

Three hospitals. More than two decades of medical experiences. Hundreds of pages of records. One extraordinarily complicated nervous system.

And a lesson that has changed the way I think about medical care, disability services, and the people making decisions about my son’s life.

My son Alex sustained a catastrophic injury at the junction of his brainstem and spinal cord when he was just six years old.

His injuries didn’t simply take away his ability to move.

They profoundly affected his autonomic nervous system—the system that automatically regulates heart rate, blood pressure, body temperature, and many other functions we rarely think about.

And Alex’s autonomic system doesn’t always follow the rules.

His heart rate and blood pressure can fall together, sometimes within seconds.

His body can respond to ordinary activities in extraordinary ways.

Sometimes he knows something is happening before the monitors reveal it.

And over the years, we’ve encountered something that I believe everyone involved in caring for medically complex people needs to understand:

Knowing someone’s diagnosis is not the same as understanding their physiology.

Nationwide Children’s Hospital: When a Specialty Isn’t the Whole Picture

Following Alex’s original injury, he spent approximately seven weeks in intensive care.

During later hospitalizations at Children’s, Alex was generally placed on a pulmonary floor, with pulmonologists managing his care.

Pulmonary expertise was important. Alex had significant respiratory needs.

But respiratory medicine was only one part of his medical reality.

His injury involved the brainstem and upper spinal cord, affecting systems throughout his body.

When his heart rate changed, his blood pressure dropped, his temperature fluctuated, or his breathing became unstable, those events could not always be understood independently.

From our experience, approaching his problems primarily through a pulmonary perspective sometimes left us struggling to get the larger neurological and autonomic picture recognized.

A person can be on the appropriate floor for one diagnosis and still need expertise that extends far beyond that specialty.

Rainbow Babies & Children’s Hospital: When Someone Looked at the Whole System

At Rainbow, we experienced a different approach.

Dr. Karen Lidsky, a pediatric intensivist, became deeply involved in Alex’s care.

And importantly, her involvement didn’t simply end when Alex wasn’t in intensive care.

An intensivist is trained to understand how multiple body systems interact, particularly when a patient’s condition can change rapidly.

That broader perspective was incredibly important for Alex.

His medical records from 2009 and 2010 document the very problems we were witnessing.

One clinical description was:

“Dysautonomia with hemodynamic instability.”

In everyday language, that means the automatic system controlling his circulation was not functioning reliably.

His records describe episodes of bradycardia, low blood pressure, and instability associated with his high spinal cord injury.

In one documented episode, while sitting, his heart rate was approximately 65 beats per minute and his blood pressure 72/41.

Other records describe his heart rate dropping into the 40s.

Why is that significant?

Because when blood pressure falls, the body ordinarily has mechanisms to help compensate, including increasing heart rate.

But with Alex’s injury, those responses can be disrupted.

His blood pressure and heart rate can fall together.

And sometimes the change happens frighteningly fast.

We have witnessed situations where his heart rate and blood pressure dropped dramatically within seconds.

A single number doesn’t tell the story.

The speed of the change matters.

What happens alongside it matters.

And knowing what is normal—or abnormal—for Alex matters.

At Rainbow, Dr. Lidsky and others investigated these responses, adjusted treatment, involved additional specialists, and listened to what Alex and I were observing.

When Alex was about 11, there was a time when he wasn’t eating solid food.

The concern initially centered on his appetite.

But Alex explained that he was hungry.

He described how eating caused pain in his belly, followed by pain in his head, followed by changes in his heart rate and blood pressure.

Specialists were brought in to help understand what was happening.

Think about the difference between documenting:

“Offered food. Refused to eat.”

And recognizing that a child is describing a potentially significant physiological response to eating.

Same child.

Same situation.

Two entirely different understandings of what is happening.

The difference begins with listening.

Ohio State: When the Numbers Tell Only Part of the Story

In June 2019, Alex spent 19 days hospitalized at OSU.

He had significant fluid accumulation around his lungs, required a chest tube, and experienced serious electrolyte abnormalities.

One series of laboratory results showed his sodium at 123, a dangerously low level.

Within less than 18 hours, it had risen to 137.

Several hours later, it was back down to 131.

For those unfamiliar with sodium, it is essential for normal nerve and cellular function. Severe abnormalities and overly rapid correction can be dangerous.

We are talking about a substantial change over a short period.

I remember warning the medical team about how rapidly Alex’s system could respond and how important it was to watch what happened next.

The records document the changes in sodium. They do not, by themselves, establish exactly what caused the rapid rise or subsequent decline.

But the experience illustrates something important.

A laboratory value is a snapshot. The direction, speed, and context of the change tell a much larger story.

During that hospitalization, there were also discussions about his diaphragm pacer.

Alex’s diaphragm pacer is his primary respiratory support, while his ventilator provides additional assistance.

The two are not interchangeable.

I remember explaining why simply turning off the pacer wasn’t equivalent to disconnecting an ordinary piece of equipment.

And Alex himself challenged that thinking.

He asked, in essence:

“Would you turn off my diaphragm to place a chest tube?”

That question says something important about Alex.

He understands his body and his equipment.

He can identify problems.

He can participate meaningfully in complex medical decisions.

What he cannot do is physically carry out many of the interventions himself.

Sometimes the Best Care Begins With Listening

In October 2023, Alex returned to OSU for kidney-stone surgery.

This time, the anesthesia team listened carefully to our explanations of his unusual respiratory support and medication sensitivities.

When they encountered a significant airway leak, they adapted their approach.

Their documentation describes the problem and how they addressed it.

We also experienced a communication problem when Alex initially arrived on a hospital floor that did not care for patients using ventilators.

He was transferred.

Think about that.

Even inside a major medical center—with physicians, respiratory therapists, nurses, monitors, medications, and emergency resources—not every hospital floor was equipped for Alex’s needs.

Yet in the community, families are sometimes encouraged to believe that having a licensed provider available is sufficient.

A license establishes a professional qualification. It does not automatically establish individualized competency for a particular patient.

And for someone like Alex, that difference can be critical.

What More Than Two Decades Have Taught Us

We have spent countless hours studying records, reviewing laboratory results, reconstructing hospitalizations, researching treatments, and asking questions.

We have worked through hundreds of pages of medical documentation, including a 150-page Rainbow hospitalization record from March 2010 alone.

And that is only one piece of a much larger medical history.

We did not do this because we wanted to become medical experts.

We did it because understanding Alex became necessary to advocate effectively for him.

And there is something else I want people to understand.

Alex didn’t become less medically complex when he left intensive care.

His autonomic nervous system didn’t suddenly become more predictable.

His respiratory equipment didn’t become less essential.

His risk of sudden deterioration didn’t disappear.

And the knowledge required to care for him safely didn’t diminish simply because he was home.

A person’s medical complexity does not decrease just because the setting changes.

That brings me to the bigger question.

Ohio is moving toward using interRAI assessments to help establish Support Levels that will eventually inform disability waiver budgets and certain service rates.

Standardized assessments may be useful tools.

But Alex’s experiences raise a question I believe deserves a serious answer.

If understanding his physiology required years of investigation, multiple medical specialties, intensive care expertise, careful observation, and listening to Alex himself…

How do we know a standardized assessment can recognize the needs that took all of us so long to understand?

Can it distinguish between someone who cannot direct their care and someone who can direct it but cannot physically execute it?

Can it recognize the significance of a sudden autonomic event, even if that event has been prevented by skilled intervention?

Can it distinguish between having respiratory equipment and understanding the individualized competency required to manage it?

Can it recognize that someone may appear medically stable precisely because another person is continuously working to keep them that way?

And can it recognize the difference between a task being completed and a clinical event being understood?

These aren’t reasons to reject assessment.

They are reasons to test the assessment against the people whose needs are hardest to measure.

Because somewhere there is another person whose complicated medical reality may be reduced to the closest box available.

We can do better than that.

Don’t force the round person into the square box.

Change the box.

And before these systems begin determining people’s supports, ask one very simple question:

What does the assessment fail to see?

That is where I would start.

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