On Tuesday evening, while we were at a gathering with other youth in our city, Michael said to me, “Shine, I need to go to the bathroom so I can try to cough.” My first thought, “Oh, no,” and a tiny little bit of dread. But I gathered myself and my confidence, and off we went to tackle the task.
Since we were in the hospital, and even since I’ve known Michael, he hasn’t had to do any great amount of coughing that he couldn’t handle himself, meaning, basically, he hasn’t gotten sick — well, except for those seven weeks in the hospital of course, and the months of recovery. I guess I should clarify. Since I’ve known Michael, he hasn’t had any upper respiratory infections besides a runny nose and a mild sore throat. Nothing has been lodged in his throat that affected his breathing that he wasn’t able to dislodge himself.
Back to the events of Tuesday … There we were, away from home, and away from our handy-dandy, life-saving ventilator, and Michael’s airways were unexpectedly being attacked by some gunk that needed to come out. Any healthy, strong person can usually take care of that with a little bit of hacking and done. Michael, however, literally cannot cough hard enough to save his life.
Here’s a bit of tricky business I learned during Michael’s hospital stay. In order to have an effective cough, you need to be able to fill your lungs up sufficiently and also be able to expel that air forcefully enough. Michael’s body can do neither. There’s actually a test to see how well a person can do these two things, among measuring other factors. It’s called spirometry, and it entails inhaling and exhaling as much and as quickly and forcefully as you can. Read more at Wikipedia, here. In fact, already seven years ago, the last time Michael did this test, the volume of air that Michael could exhale after inhaling as much as he could was less than one third of what is considered normal (FEV 26%). Additionally, the force with which he could expel that air was also less than one third of what is considered normal (FEV1 29%). That’s pretty bad.
So, what do you do?? Enter, manually assisted cough! It’s basically the same concept as the Heimlich maneuver, but not. You can do it while the person is lying down or sitting up. And however you do it, you’re helping force air out of the lungs so the cough is more effective. I think we could stand to learn a few things yet.
Here’s a YouTube video of a manually assisted cough with a device to get more air into the lungs. That looks pretty effective actually. We might need to try that in the future.
When we were trapped away from Michael’s life-saving ventilator, which would help him breathe better in the meantime, the only option was to do what we could do. I think we spent at least twenty to thirty minutes with Michael trying to cough and me assisting with all my might to compress his chest and diaphragm to get that cough to work! It didn’t really work, but I frequently checked Michael’s oxygen saturation with our handy-dandy finger monitor that we got on Amazon for less than $30. It’s fast, accurate, and silent. I don’t know if the exact model is available in the States, but there are other similar models by the same company, and they’re even less expensive. We got Michael to an okay place where he was mostly able to breathe, and his oxygen saturation never dropped below 95%, so that was a relief. Thankfully, the place where we were, was only a few blocks from home. We were able to reach Michael’s ventilator fairly quickly and give his body a break.
This on and off again alternation between the ventilator and manually assisted coughing lasted for a few hours with little success. However, at that point, Michael was so tired he was practically falling asleep sitting up, so we decided to go to bed. And that’s when we had a breakthrough!
The whole time, we were listening to music, praying, and trying to rest. My arms were tired, and I was getting worried and considered that we might need to call paramedics to help us. — You guys! This is just some phlegm. Can you believe it?? This is crazy! His airways are partially obstructed by a little piece of mucus, and he can’t.get.it.out. It’s keeping him from breathing well, and he already can’t breathe well. Is this not insane? Is this blowing your mind yet how something so simple can be such a huge problem?? And with all of these things going on, it is stressful and physically exhausting for both of us.
But thank the Lord, there was a light at the end of the tunnel. In bed, we finally found a more effective technique for the cough assist, in which I sat behind him and wrapped both arms around the bottom of his rib cage and also had my hands on his abdomen to do the Heimlich-type assistance. And it worked! And it was sooo tiring.
And then there was still more to get out, but I just could not. My arms were done. So we settled down to rest. Twenty minutes later, up again for more. Then rearranging covers and pillows and body and blankets, and I laid down. Then up again. Then rearrange for sleeping. Then again a number of times until after 2am. Talk about exhausting. But we finally got a couple stints of actually getting to sleep for more than thirty minutes, interspersed with some more mini-crises before we finally got to sleep like normal (which means getting up about every hour, or whenever he wakes up, to turn him.) Two days later, my arms were still so sore I could barely reach my hand around behind me to scratch my back.
Thankfully, since then, the need for deep, assisted coughing has been very minimal, but it has definitely been a different experience for us both, I believe.
The day after the coughing fiasco and nighttime craziness, Michael slept until mid-afternoon and went to bed six hours later, and he was exhausted the whole time. The next day, a little better, but he ended up feeling so tired that he needed to use his ventilator during the entire day, and he usually only uses it at night. The next day, more energy and less time on the vent — that was yesterday. And today, more gunk making breathing a little more tiring.
A simple cold. Not even a bad one.
But I have to believe that this ordeal will be gone for good very soon. We have things to do! Places to go! People to see! Life to live!
If there’s one thing I’ve been learning these last couple years, and especially in the last year: Flexibility is king. All the plans we make can be totally thrown by something as small as a broken elevator or as big as sudden cardiac arrest. I’m trying to make peace with my blueprints for life getting thrown out the window now and again. Roll with the punches; take it easy; make the most of every moment.
Also, you can help! Try to keep your illness contained so that others affected by neuromuscular diseases or paralysis or compromised immune systems or any host of other things that make them susceptible to simple infections, are a little more protected. Thanks!