Preparing for a Respiratory Emergency

ALS has compromised the breathing of my husband, Todd, to the point where his positioning — unless he is using the Astral noninvasive ventilator — can mean the difference between being able to breathe or not. We only realized how bad it was a couple of weeks ago when we had a close call.

I left Todd in the bathroom for a few minutes while I prepared his pills, just as I’ve done for the last couple years. But this time when I returned, he wasn’t able to talk. He frantically moved his lips, but no sound came out.

I didn’t know what he was asking me to do, so I pushed on his abdomen, thinking perhaps mucus was blocking his airway. Somehow I got the idea that he wanted his noninvasive ventilator. Maybe pushing on his abdomen passed enough air over his vocal cords for him to say what he wanted, or maybe I suggested it and read agreement in his eyes. It’s somewhat of a blur for both of us.

In any case, I ran to Todd’s office to grab the Astral as quickly as I could. I hurried to unhook it from the humidifier, unplug it from the power strip, and run back to the bathroom to place the nostril pillows against Todd’s nose and start the machine. But the noninvasive ventilator didn’t get his lungs to work. It blew air into his nose, but he couldn’t inhale and exhale.

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He managed to communicate that he wanted the cough assist machine. I ran back to his office and wheeled a cart with the device on it into the bathroom. I plugged it into an outlet and held the mask over his face. The machine pushed and pulled air into and out of his lungs. Todd looked relieved, but he still couldn’t talk.

“Close your eyes if you want me to transfer you to your wheelchair,” I said.

His eyes remained open.

“Close your eyes if you want to keep doing this.”

He shut his eyes tightly, and I continued to hold the mask to his face.

After a few minutes, he was able to tell me to put him back on the Astral. He then explained what had happened — his breathing became shallow. He tried to keep breathing, but his breaths became smaller and smaller until he couldn’t breathe at all.

We discussed Todd’s close call with his respiratory therapist, who said it sounded like Todd ran out of tidal volume, which is the amount of air that moves in or out of the lungs with each respiratory cycle. The cough assist machine was the right tool to get his lungs working again. The therapist also showed me how to use an Ambu resuscitator bag, and I now have that ready to use quickly if needed.

One of the scary things about the incident was not being able to communicate until I hit upon the idea of asking Todd to open or shut his eyes. A number of technologies enable nonverbal communication, but Todd hadn’t needed them yet and likely wouldn’t qualify for Medicare to pay for them at this point.

We’ve since come up with low-tech nonverbal communication tools in case of an emergency:

I printed six pieces of card stock with three items per page. The first page lists 1) Manual Assist Cough, 2) Cough Assist Machine, and 3) Noninvasive Ventilator. I can hold it up and ask Todd to close his eyes if what he wants is on the page. If he closes his eyes, I can then ask him to blink which number he wants.

If his eyes stay open, I can move on to the next page. Other pages list things such as Suction, Pee, Poop, Put Me in Wheelchair, Put Me in Bed, I Need a Drink, I Need to Vomit, Wipe Eyes, Wipe Nose, I’m in Pain, Call an Ambulance, Get the Kids, Get Kristin, and I Love You.

Todd also found a tap-code alphabet on a 5-by-5 grid, with the letters C and K sharing the same cell. We tried it out once with him blinking out the columns and rows for each letter and me writing them down to spell the word “hot dog.” I printed the chart and put it in a folder with the other sheets. The chart is much slower, but he would be able to communicate something that we didn’t foresee.

We’re being more cautious now. I’m not leaving Todd unattended in the bathroom, and he always wears the noninvasive ventilator when I leave the house. Hopefully, we won’t have another scare, but if we do, we’re more prepared.

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