The things that go beep in the night
One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind sometimes incorporates the sound into my dreams instead of waking me. But this one was unfamiliar. What was it?
Living with SMA means that I depend on people and machines to care for me at all hours, including through the night. SMA doesn’t shut off when I fall asleep. Rest is still essential, though, so additional machines must be turned on to provide my body with extra support to sleep comfortably and safely.
One of the most important pieces of equipment is the ventilator. The simple act of breathing can be exhausting for me and requires a surprising amount of conscious thought. Maintaining the constant movement of expanding and shrinking my lungs eventually wears me out instead of fueling me.
The ventilator allows me a needed break from the expenditure of my physical and mental energy. As the air whooshes gently from the machine, through my tracheostomy tube, and into my lungs, I can sleep peacefully while my body continues receiving care.
This wondrous machine can’t do everything, though. That’s why it measures how my body is responding and lights up and begins alarming if the readings don’t match my custom settings. This could indicate that the tubing has disconnected, there’s mucus blocking my airway, or some other issue that needs to be determined by my mom or nurse, who will respond to the beeping and care for me in ways that only real people can.
This night, however, the vent remained dark and silent.
The vent has a friend it works in tandem with: the oximeter. This device has a sensor that wraps around my toe or finger to monitor my oxygen saturation and heart rate. If my oxygen saturation drops too low, something is interfering with my breathing. Changes in my heart rate, especially if it spikes, could signal oncoming illness. Like the vent, it starts beeping when something doesn’t seem right.
It’s most effective to use these machines together. Any device can malfunction or miscalculate, so when it comes to my health, we need to have backups. Using both pieces of equipment, combined with human monitoring, adds another layer of protection. One can catch something the other missed.
But the two were in agreement this time. There was no reason for either to sound an alarm.
Could it be the feeding pump playing tricks? Instead of just having a midnight snack, my feeding tube delivers a full meal and vitamins every night while I sleep.
Most nutrient-dense foods are difficult for me to chew or swallow, and I’m unable to consume large quantities of food because of the fatigue eating causes, which means I rely on the feeding tube for my nutritional needs and just eat small portions for enjoyment. The tube also ensures I’m well hydrated and can receive any needed medications.
A feeding tube also runs during the day, but the uninterrupted nighttime is perfect for providing a larger amount of sustenance to recharge my body. And when the food runs out or the tubing gets clogged, the machine starts — you guessed it — beeping.
Once again, though, this wasn’t the answer to the mystery. There was still another course or two in my meal.
There could be only one other option for the usual sound sources in my room. I have an E-Z Call button, which is a square touch pad I lay my hand on when I want to ask for help while lying down. Examples of when I might use it are when I’m uncomfortable and need repositioning, I’m too cold and want another blanket, I’m too hot and want fewer blankets, or I dropped my phone and can’t lift it back off the mattress myself.
With my extremely limited mobility, my muscles typically remain still unless they’re intentionally moved by me or others. That means I probably didn’t accidentally press the button in my sleep. I also know none of our three cats sat on it because they’re not allowed in my room at night, much to their dismay.
Unmasking an unexpected culprit
After quickly ruling out these possibilities, it was time to think outside the box. The answer dawned on me just as Mom reached my door, having also been woken by the noise, and it had nothing to do with SMA. “It’s the smoke detector,” I said. How is it that the batteries always seem to die during the night?
So, in the darkness, Mom pulled it off the ceiling and took it to the kitchen for new batteries. Then she came back with a whole new detector. Why? Because the old one kept beeping.
How spooky.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
The post The things that go beep in the night appeared first on SMA News Today.
