Answer to a question...
Someone recently sent me a question about my son Alex. They asked how I know when he is struggling to breathe at night.
I had written a post back on November 20th about the reality of Alex’s injuries. In that post, I talked about a time when Alex was struggling to breathe while we were going through a drive-thru to get food. That story prompted this person’s question about nighttime.
Well…first of all, when Alex first came home, nighttime was frightening.
The thought of an alarm not working properly was scary, to say the least.
Years ago, before Alex’s accident, a neighbor of ours had a premature baby who came home on an apnea (breathing) monitor. I remember thinking how terrifying it must be to sleep while depending on a machine to alert you if something was wrong.
My neighbor told me, “You get used to it.”
And over time, you do.
You get used to the monitors.
You learn which alarms matter most.
You learn to trust them as much as you need to.
But something else also happens.
You begin to tune in differently.
Almost like developing special ears or sensors that God gives parents, so that you are not depending only on machines, but also on the natural alert systems He wired into us.
So how do I know when Alex is struggling at night?
One very important thing that developed over time is that Alex himself figured out an effective way to get someone’s attention, day or night.
Years ago, Alex developed his own “clucking” alarm system.
He learned how to make a loud clucking sound with his mouth. Believe me, when he wants it to be annoying, it can be VERY effective. He is still a kid, after all!
But that cluck became much more than a funny sound.
It became a way for Alex to alert me to a need before an alarm ever goes off.
Sometimes the cluck means something serious.
Sometimes it means he needs repositioned.
Sometimes it means his nose needs wiped (which can happen A LOT, just like with any of us).
Sometimes it means an itch.
But the important thing is this:
it gave Alex a way to communicate quickly and effectively.
Another important thing is that my bed is only a few steps away from Alex’s. That allows me to get to him very quickly if needed.
I would love for him to safely have his own room someday, but we have not fully figured that out yet. I personally do not trust video monitors enough for our situation.
Alex also has multiple layers of alarms and monitoring:
- His ventilator itself has alarms that go off if something starts going wrong with the machine or if his breathing tubes become disconnected. (And yes…they HAVE come disconnected many times.)
- He wears a monitor that tracks his oxygen levels and pulse. It also has alarms, and I intentionally set them to the loudest and most obnoxious sound possible. I wanted those alarms to sound very different from the ventilator alarms.
Most people have probably heard monitors like this on medical television shows or during hospital visits.
But honestly, what I feel becomes the most important ability over time is learning to recognize problems before an alarm sounds.
It is similar to what happens when you bring home a newborn baby. Suddenly you become attuned to tiny sounds and subtle changes you never would have noticed before.
For example, there is a part on Alex’s ventilator called the pressure control tube. If that tube comes disconnected, the ventilator itself does NOT alarm.
I have asked the company why they do not have an alarm for that particular issue, but at least at that time, it still did not exist.
Over the years, I learned I could often hear the subtle sound change before the tube completely detached.
If Alex is awake, he notices it immediately and either tells me — if he still has enough air — or he clucks.
The cluck is honestly a pretty amazing thing because he can still do it even with very little air reserve.
So that is a little glimpse into how nighttime works in our world.
There have been many nights where I have jumped out of bed because of disconnected tubing, alarms sounding everywhere, or Alex struggling.
You learn to wake up very quickly and respond very quickly.
And remember:
I had absolutely no medical training before Alex came home.
That is true for many parent caregivers I have met on this journey.
We love our children.
We pray.
We learn.
We adapt.
And we engage.
God is a very good teacher.
He is patient, thorough, and faithful to teach us what we need if we are willing to learn.
