“Well, he wasn’t desatting.”

 “Well, he wasn’t desatting.”

Those were the words a nurse said to me during one of Alex’s hospitalizations at Ohio State.

And they illustrate something I believe is critically important for anyone caring for individuals with complex medical needs.

We should not have to wait for a person’s condition to deteriorate before responding to what they are communicating.

Let me explain.

Alex sustained a catastrophic injury in 2004 involving his upper cervical spinal cord and brainstem.

He has quadriplegia, uses a tracheostomy, and relies on a diaphragm pacer as his primary respiratory support, with additional assistance from a ventilator.

He also experiences significant autonomic instability.

But Alex is cognitively intact.

He communicates, makes decisions, recognizes changes in his body, and directs his own care.

And one of the things he knows very well is when he needs his airway cleared.

First, a little respiratory education.

Alex can go extended periods without needing suctioning (clearing his airway).

That might surprise people.

But there’s a lot happening behind the scenes.

His diaphragm pacer provides respiratory movement. He receives continuous heated humidification, daily respiratory vest therapy, and frequent repositioning and movement throughout the day including going on his side. 

Together, these are important components of his individualized respiratory care.

His secretions are generally well mobilized.

And when he senses that he needs his airway cleared, he tells us.

Think about when you need to cough.

You recognize that sensation before someone else necessarily sees evidence of a problem.

You don’t ordinarily wait for a pulse oximeter to tell you it’s time to clear your airway.

Alex recognizes that need, too.

The difference is that he cannot independently perform the physical action necessary to clear his airway.

He needs someone else to do it.

That does not mean he cannot recognize when it is necessary.

Now, back to OSU.

During that hospitalization, I was not permitted to suction Alex, even though he had directly communicated that he wanted me to.

One day, Alex told me he needed suctioning.

I pushed the call button.

No one came.

Knowing Alex needed his airway cleared, I began preparing to suction him.

When the alarms sounded, a nurse came into the room and asked what I was doing.

I explained that Alex had told me he needed suctioning.

His response?

“Well, he wasn’t desatting.”

My response was simple.

We don’t wait for desaturation.

Alex knows when he needs his airway cleared.

And there is an important medical distinction here.

Oxygen saturation is not the same thing as airway clearance.

A pulse oximeter measures oxygen saturation in the blood.

It does not directly measure mucus accumulation, the sensation of needing to cough, or whether someone needs assistance clearing secretions.

A person can recognize an airway problem before oxygen saturation begins to fall.

And depending on the circumstances, waiting for desaturation may mean waiting until a problem has already progressed.

That does not mean suctioning should be performed unnecessarily or without appropriate assessment.

Suctioning itself has risks.

But the absence of desaturation should not be the sole reason to dismiss a person who is communicating a need for airway clearance.

Especially when that person has spent more than twenty years learning to recognize the responses of his own body.

Here’s where individualized care matters.

Alex’s respiratory system is not typical.

His diaphragm pacer is his primary respiratory support.

His ventilator provides additional assistance but is not configured to independently replace that support.

His autonomic nervous system can respond dramatically to physiological stress.

His tracheostomy is also highly individualized.

He continues to use a Bivona 5.5 TTS, the same size and type he began using in 2004. Decisions about his airway equipment have involved considerations beyond simply increasing tube size as he grew.

That smaller tube also requires awareness of the potential for displacement.

All of these details matter.

And they matter together.

A caregiver must understand not only how to perform suctioning, but when it is appropriate, how to perform it safely, and how Alex responds.

A caregiver must understand his equipment and recognize when something is wrong.

Most importantly, that caregiver must listen to Alex.

There is another important part of this story.

Alex specifically told the hospital staff that he wanted me to suction him.

He was expressing his wishes about his own care.

Hospitals have legitimate responsibilities regarding who is authorized and qualified to perform medical procedures.

But if a hospital restricts who may provide an intervention, it must still have a reliable process for responding promptly when the patient communicates a need.

And the patient’s voice must remain part of the clinical assessment.

Physical dependence does not eliminate self-direction.

Alex can recognize what his body needs.

He can communicate it.

He can direct someone to assist him.

He simply cannot physically execute the intervention himself.

Those are very different things.

Now consider how this might appear in an assessment.

Suppose Alex goes three days without needing suctioning.

An assessor might accurately document:

No suctioning performed.

But what does that tell us about his actual respiratory needs?

Does it capture the continuous humidification?

The diaphragm pacing?

The daily respiratory vest?

The frequent repositioning?

The monitoring and individualized observation?

The availability of someone who can safely intervene when necessary?

Does it capture Alex’s ability to recognize and communicate when he needs assistance?

And does it recognize the consequences if someone is not available or competent to respond?

Counting how often a procedure occurs is not the same as understanding what makes that procedure necessary—or what prevents it from becoming necessary.

This is particularly important as states increasingly rely on standardized assessments to inform services and supports.

Prevention is care.

If an individualized respiratory routine helps keep secretions mobile and reduces the need for suctioning, that is a positive outcome.

It does not mean the respiratory care is unnecessary.

If Alex communicates an airway concern and someone responds appropriately before his oxygen saturation falls, that is also a positive outcome.

It does not mean there was no need for intervention.

And if a caregiver recognizes a problem early enough to prevent a crisis, that caregiver’s work should not become invisible simply because the crisis never happened.

Successful prevention should never be mistaken for an absence of need.

Here’s what I hope more people understand.

Monitors are valuable.

Clinical training is essential.

Medical protocols matter.

But so does the person receiving care.

A monitor provides information about physiological measurements.

A person may recognize and communicate something happening in their body before those measurements change.

Good care brings those sources of information together.

It does not automatically dismiss one because the other has not yet registered a problem.

For someone like Alex, who cannot physically cough effectively or independently clear his airway, that distinction can be especially important.

And it is one reason I continue advocating for individualized competency, continuity of caregivers, and assessments that recognize more than the frequency of completed tasks.

Because the question isn’t simply:

Can this caregiver suction someone?

The questions are:

Can this caregiver recognize when Alex needs suctioning?

Will this caregiver listen when Alex tells them?

Does this caregiver understand how to intervene safely?

And can this caregiver respond before a preventable problem becomes an emergency?

Those are not interchangeable measures of competency.

After more than twenty years of caring for Alex, I’ve learned that some of the most important interventions are the ones that prevent a situation from escalating.

And some of the most important clinical information comes directly from Alex.

We don’t wait for the monitor to prove that Alex was right.

We listen.

We assess.

We respond appropriately.

And whenever possible, we prevent the crisis in the first place.

Because the goal has never been simply to keep Alex alive.

The Goal Is Life. ❤️

#TheGoalIsLife #LivingNotJustExisting #DisabilityRights #PatientAdvocacy #ComplexCare #SpinalCordInjury #HomeAndCommunityBasedServices #HCBS #PatientCenteredCare #CaregiverCompetency #PreventiveCare #ButGod