Specialized Equipment

 One of the realities of living with complex medical situations is that when something goes wrong, you often cannot simply run to Walmart for a replacement.

Many of the things Alex depends on are specialized pieces of medical equipment that most people — and honestly even many hospitals — do not have immediate access to.

One situation especially stands out in my mind.

Alex and I had gone to one of Aaron or Ryan’s baseball games. At that time, Alex had been having episodes where he would suddenly need oxygen, so I brought an oxygen tank with us.

At home, we also had a machine called an IPV (Intrapulmonary Percussive Ventilation) machine. Dr. Lidsky in Cleveland had helped get us set up with it.

That machine was incredible.

More than once, it worked almost like magic to help break up and clear mucus plugs from Alex’s airways.

What I learned, though, was that many hospitals did not even have an IPV machine available.

So there we were at the baseball field trying to watch the game when Alex suddenly started struggling significantly.

I immediately put oxygen on him, but I knew the oxygen itself was not going to solve the real problem.

He needed the IPV.

The challenge was figuring out how to get him home safely.

The baseball field happened to be right next to a fire department, but I also knew that if I called for emergency transport, protocol would likely require them to take us to the local rural hospital.

And I already knew that hospital did not have an IPV machine and had very limited ability to help with the specific situation Alex was facing.

So now we had another real-time problem to solve:
How do we safely get Alex home to the equipment he actually needs?

Eventually, I found someone willing to drive us home.

During the drive, I stayed with Alex manually giving him breaths using the ambu bag because the mucus plug was preventing the ventilator from functioning properly.

And just to make matters more complicated, suctioning had not worked either.

We finally got home, got Alex inside, and as soon as I started the IPV treatment…

he was okay.

Just like that.

Moments like this taught me something important:
high-acuity homecare is not simply about following generalized protocols.

Sometimes it requires understanding:

• the individual person,
• the specific equipment,
• what resources are and are not available locally,
• what interventions actually work,
• and how to adapt quickly in real time.

Those experiences also taught me that many families living this life quietly develop an extraordinary amount of situational knowledge and problem-solving ability because they have to.

You learn because the situation demands it.

And often, the decisions being made are not theoretical.

They are happening in real time while trying to protect someone you love.