A repost 😁
Here’s the post…
The picture above is of a suction machine. The importance of that picture will become clear as you read this post.
First, I just want to say this: if any of you are facing situations that seem beyond your abilities, please know that at one point I was you. Most of us are capable of far more than we realize. Sometimes we simply never have to try because we are never placed in situations that require it.
I also know this very clearly: I cannot do what I do unless God shows me, guides me, and strengthens me. Whatever abilities I have are gifts He gives me for the work He asks me to do.
So…here is the week in review.
It was an interesting week at school for Alex.
First, he was supposed to take the practice OGTs (state tests), but there are still some accommodations and logistics that need worked out, so he did not have to take them this year.
Then Monday night happened.
Alex kept having severe muscle spasms while he was sleeping. If you have never seen his spasms, I would describe them like those giant windsocks outside car washes — flying all over the place. He was spasming every 10–20 minutes ALL night long.
Which meant neither of us slept much.
We still attempted school the next morning, but he could barely make it through. We ended up leaving early, and he does not even remember seeing his last teacher that day. I had actually encouraged him to go because staying home is very unlike Alex. I thought he might be getting really sick.
We came home, he rested, slept well that night, and the next day he was back to doing great.
That is how unpredictable life with Alex’s injuries can be.
Then came the equipment failures.
One day at school, an extremely important piece of equipment stopped working — Alex’s humidifier. He HAS to have high heat and humidity. Without it, his lungs dry out very quickly.
Thankfully, we had a backup humidifier at home, so we left school, switched him over, and called the respiratory company. Unfortunately, several patients had experienced failures at the same time, so it would take a few days to get a replacement.
No problem. We adapted.
The next day I simply used the backup humidifier mounted on his chair. Inconvenient? Yes. Doable? Yes.
Then yesterday happened.
We were at school when the backup humidifier also stopped working.
At that point I called the respiratory therapist and basically said, “Help!”
She immediately understood the urgency and brought us another humidifier from their office — one they had intended to use elsewhere. Because we were in crisis, she rerouted it to us.
Problem solved.
Or so we thought.
Today, Alex and I were sitting in class when he started needing his airway suctioned. Alex hates missing anything, so he waited until class was over before asking me to suction him. Obviously he was stable enough at that moment or I would have taken him out immediately.
Class ended. I wheeled him into the hallway, got everything ready, and…
…the suction machine would not work.
UGH.
I called into the classroom and asked the teacher to run to our van and grab the backup suction machine.
Again, most people do not carry backup machines around with them. Over the years we have purchased equipment ourselves and received other pieces from families whose loved ones had sadly passed away. We learned the hard way to carry backups of as much as possible.
People used to question why I carried so much equipment everywhere.
Most people who know us do not question it anymore.
The teacher came back with the second machine.
It did not work either.
At this point I sent him back to the van again while I tried to keep Alex comfortable.
Now, I do know an emergency way to clear his airway without equipment, but it is absolutely a last resort.
Meanwhile, several teachers had gathered around us wanting to help in any way they could. I also sent for a staff member who used to be an EMT to confirm the emergency method in case I truly needed to use it.
And yes…here is the unpleasant truth.
The emergency method would have required me to use the suction catheter tubing manually with my mouth to clear Alex’s airway.
That is why you do not want to reach the emergency method.
A few students had also gathered nearby. They were concerned about Alex and refused to leave until they knew he was okay.
(And have I mentioned how much I love the students and staff at Indian Lake?)
I eventually took Alex into the room with the hospital bed, positioned him onto his side to help loosen secretions, cleared his airway, got him repositioned back into his chair…
…and the boy immediately started talking away like normal.
I tell you, my Alex is one courageous kid.
It is late on Friday night, but I wanted to write this because today reminded me again just how precious the hearts of the people at our school truly are.
Today was a minor incident that could have become a major one, and everyone handled it beautifully.
I sincerely hope we never face a true major emergency at school, but if we do, today gave some people a little glimpse into our world, and they responded with compassion, calmness, and willingness to help.
This mom wants to say a very big THANK YOU.
One more important note:
After I shared part of this story on Facebook, another ventilator mom told me she was going to get a backup suction machine. I wanted to clarify that the actual problem was not the machine itself — it was the collection chamber attached to it.
If you look at the picture above, the chamber is the clear container. The lid contains a special internal piece and if that piece malfunctions, the suction will fail.
So yes, I carry backup chambers too.
Actually, I carry:
two oxygen tanks,
full backup ventilator circuits,
extra connector pieces,
backup ambu bags,
extra trachs,
emergency respiratory supplies,
and basically anything I can physically fit into our van and emergency bags.
I learned all of this from experience.
My motto is simple:
try to avoid crisis.
Because crisis is not fun for anyone involved.
Alex and I have learned so much together over these years. If you are going to venture into territory where few people have gone before you, you are going to get a little sweaty, dirty, scared, and exhausted along the way.
Home ventilator care is still relatively new.
Living at home AND participating in public life on a ventilator is even newer.
You cannot simply run into Walmart and buy most of the things we need if something goes wrong.
And not every emergency means you immediately need an ambulance or hospital.
Families living this kind of life learn to think differently. We learn to prepare differently. We learn to solve problems in real time.
We learn because we have to.
Carving roads…
May those who come behind you have a smoother path because you were willing to persevere.
Important note: The respiratory company mentioned in this older post was not the company we use now in 2026— the one we use now specializes in medically complex situations.
That distinction matters.
This older experience is part of why I now recognize the difference between a company that treats equipment as a supply item and a company that understands equipment as part of a person’s life-support system.
