When Secretions Tell a Story: Lessons Learned from Alex’s First Year Home

This weekend Alex has been having increased secretions—actually a lot of them.

Although it creates more work on my end to get the junk out, I cannot imagine being in Alex’s position.

As always, I am watching closely—not just the secretions, but Alex himself.

Because of Alex’s injuries, he does not develop a typical fever. If he is becoming sick, his body often gives us different clues. He may have increased spasms. His heart rate may ride higher than normal. His oxygen levels may change. His overall presentation may be different.

Fortunately, Alex is very in tune with what he is feeling and is able to communicate that.

So together we monitor and assess.

Is he reacting to the dramatic weather changes we’ve been experiencing?

Does he feel sick?

Is there something else going on?

We are always walking a fine line. Things can go south quickly with Alex, and we never want to miss something important.

These questions immediately brought me back to 2005, when Alex first came home after his injury.

At that time, none of us truly understood the full severity of Alex’s injuries. We knew they were significant, but many of the details we know today were never fully explained to us. Looking back, I have a thousand questions I wish I had known to ask, but I also know they probably would not have had all the answers. Alex’s injuries are that rare.

Alex came home after 93 days in the hospital following the car accident. He was only home for two days before he returned to the hospital with severe hypothermia. The first nurse had documented declining temperatures and heart rates, but the significance was not recognized in time.

At the same time, the hospital was struggling to find nursing coverage for Alex at home. An agency had assured the case manager they could fully staff his nursing hours.

They could not.

This was in 2005.

Things have only become more difficult since then.

As a result, Alex went back and forth between home and the hospital multiple times.

Throughout those months, one problem seemed relentless.

Secretions.

His lungs were filling with junk—a lot of it.

Doctors prescribed medications and essentially back-to-back aerosol treatments. At one point they even placed Alex on his stomach and percussed his back in an attempt to break up the secretions.

Yet the secretions continued.

In many ways, they seemed to get worse.

Eventually, one physician pulled me aside and gave me what I now call “the death talk.”

The message was simple.

They had tried everything they knew to try.

They were running out of options.

We should prepare ourselves.

Alex came home on supplemental oxygen and respiratory treatments.

But something about the situation never sat right with me.

One day, after praying and asking God for direction, I felt impressed by a very simple thought:

Get the junk out.

That became my focus.

I only had a small hand-held percussion wand, which was not particularly effective.

What I did have were my two hands.

I remembered learning that changing positions could sometimes help mobilize secretions.

So I rolled Alex from side to side.

I used the percussion wand.

I percussed his back.

I suctioned.

And suctioned.

And suctioned some more.

Then finally—progress.

We started getting it out.

And as we did, something remarkable happened.

Alex improved.

The oxygen was no longer needed.

The medications were no longer needed.

The cycle finally began to break.

What I learned from that experience has stayed with me ever since.

If secretions sit in the lungs, they create an environment where unwanted organisms can thrive.

Removing the secretions does not necessarily eliminate every organism.

But it removes the environment those organisms need.

It removes the host.

It sounds basic because it is.

Yet that lesson changed how I think.

It also taught me something important about symptoms.

The presence of secretions does not automatically tell us why the secretions are there.

And that distinction matters.

Today, when Alex develops increased secretions, I absolutely consider infection.

But I have also learned not to assume infection is the only explanation.

Over the years, Alex and I have noticed patterns.

Weather changes.

Humidity changes.

Temperature swings.

Environmental changes.

All of these sometimes seem to be associated with increased secretions.

That observation led me to learn more about how the body regulates secretions.

What surprised me is that there is not a single “secretion center” in the brain.

Instead, secretions are influenced by a complex interaction between:

• the autonomic nervous system
• brainstem autonomic centers
• vagal pathways
• airway reflexes
• inflammatory responses
• environmental triggers

For many people, these systems operate quietly in the background.

For Alex, whose injuries involve the cervicomedullary junction, upper cervical spinal cord, and autonomic pathways, physiologic responses have never been entirely typical.

Over the years we have seen:

• dramatic autonomic shifts
• temperature regulation challenges
• unusual heart rate responses
• sensitivity to relatively small amounts of mucus
• exaggerated reactions to environmental changes

This does not mean every increase in secretions is harmless.

Far from it.

It means we have learned to ask a more complete question.

Not:

“Are there secretions?”

But:

“What is causing the secretions?”

Those are very different questions.

This distinction also highlights something I believe healthcare systems sometimes struggle to recognize.

Many training models teach providers to identify problems, which is important.

But when symptoms appear, there can be a tendency to immediately assume the most common explanation.

Increased secretions become infection.

Heart rate changes become cardiac problems.

Blood pressure changes become emergencies.

Sometimes those assumptions are correct.

Sometimes they are not.

For individuals with complex neurological injuries, autonomic dysfunction, ventilator dependence, diaphragm pacing, and decades of lived experience, the answer may require a much broader understanding of the person’s unique physiology.

That understanding rarely comes from a checklist.

It develops through observation.

Through experience.

Through pattern recognition.

Through listening to the individual.

And through asking not only what we see, but why we are seeing it.

Twenty-one years later, I still suction when Alex has increased secretions.

But now we also have years of experience observing patterns, watching for additional symptoms, and learning how Alex’s body tends to respond.

It is a line we walk carefully.

A line between vigilance and overreaction.

A line between confidence and humility.

A line that requires experience, judgment, and a lot of prayer.

And through it all, we continue to trust that God is sovereign, even when we do not have all the answers.

#ButGod

#TheGoalIsLife

#LivingNotJustExisting