“ Bumps In The Road “ Chapter 59

Being a PALS who lives at home, you can expect some bumps in the road with steep learning curves. I'm sure even say a PALS in a medical facility will experience learning curves from time to time.

So to say we haven’t hit a few bumps along the way would be a lie. When I first started losing my balance, I refused to slow down around the house until I fell off of a four foot wall. The lesson there was to allow others to do more outside work for me and wear elbow pads around four foot walls. Okay I will stay the hell off four foot walls too and because you have to laugh in life, Laura used a filter to make this video.

When I first came home from the hospital after getting my tracheotomy, Laura received very little training and we were faced with figuring out how all the equipment worked, plus the logistic of fitting it in the house. Trial and error plus a few YouTube videos and she is an expert.

Over the past year, Laura and my daughters have become very proficient in my care and have taught the staff who care for me. This was proven the other day when we hit another bump in the road.

I was lying in bed watching tv and I could hear the mucus rattling in my chest. Nothing unusual as it happens everyday, and I normally have the time to ask someone to clear my canula with the suction machine. I was just checked on and my alert bell was set but sometimes my fingers are too weak to push it.

Shortly afterwards, I could feel mucus building up around my inner canula, slowly closing the hole needed to breathe. Normally, I would strongly exhale through it to open the airway enough until cleared, but this time was an exception. As I exhaled, the airway got smaller and my ability to breathe lessened and grew tighter and tighter like a snake wrapped around my neck. At this point, I knew I needed help and pushed my alarm, but my fingers were not strong enough and the alarm didn’t make a sound.  By now I could barely get any air in or out. The best way I can think to explain what happens is that normal breathing for me is like breathing through a straw, and sometimes fingers seem to slowly close on that straw. You can still breathe enough to get some air, but you know you are in trouble without help.

As my airway began to close, I started to feel my heart beating harder and faster at what felt like 200 bpm. My hearing was getting cloudy like having water in my ears. My eyes felt like they were slowly pushing out of my head as my vision began to blur. I could feel the oxygen leaving my body as my chest got tighter and heavier. I imagined myself looking like Arnold Schwarzenegger in the movie Total Recall.

Fortunately, I am a fan of mixed martial arts and my elite Army training has taught me to stay calm. My body was screaming to panic, but my mind said stay calm and trust the process. We have procedures in place for emergencies. First is the button, but since that failed I was hoping to be seen on the camera. With little movement I have left, though, I imagine I look like a still picture so it didn’t catch anyone’s eye. Lastly, the ventilator is supposed to alarm after one minute if it drops below 10 breaths per minute. So while laying there with less and less oxygen and what felt like five minutes, I told myself to wait for the alarm knowing the second it goes off someone would come to rescue me.

Suddenly, like the angels breaking through the clouds singing, the alarm on my ventilator sounded. Within seconds, Laura, Dominique, and our family friend were all in the room giving me care. Dominique quickly grabbed the suction machine and Laura the ambu bag and giving out directions to call 911. It was not longer than a minute before I was breathing again, my face turned from blue to pink again and panic turned to calm.  The 911 operator on the phone was told everything was ok and the all clear was given.

Taking the time to evaluate what happened, we made a few adjustments.   First we purchased a different call bell. This bell is super sensitive so you can use your head, hands, feet or other body parts. I use my thumb and it’s working great. We also moved the camera closer to see my face better. ALS continually changes, so you have to change too.

Just another bump in the road. It’s inevitable that PALS and CALS will hit a few bumps, but as long as you are prepared, the big bumps will turn into little bumps.  Regardless of the size, we learn from every bump and they make us stronger. Get familiar with the equipment, make sure the alarms and call bells work, and check them daily. Conduct fire drills with everyone so you are all prepared and don’t panic.

I am truly grateful for my CALS and what they do to be prepared to help me keep this blog going.

Love and Blessings.