“Time” Chapter 18

"Laura I can’t breathe, call 911" and just like that tens days were lost.

On 2 January 2023, I was rushed to the hospital once again. 

Pressure in my chest, swelling in my feet, elevated heartbeat and frequent hot flashes over the past four days were clear signs I needed help. Could this be a heart attack?

I arrived at the hospital ER and they quickly did tests and ruled out my heart.  A few x-rays and more tests determined that it was pneumonia... again.  This would be the third time I’ve had pneumonia since August 2022 and here I was, back in the hospital for an extended stay.  My first thoughts were, "will this be a repeat of my last hospital stay?" I immediately flashed back to those long days.  Am I going to lose more weight and muscle strength? Will the staff be as horrible to me? Will I be pumped up with drugs and be an ass to my wife and family again?

Four days earlier at home I was having hot flashes out of nowhere. My temperature was fine, but my heart rate would shoot up over 110 while sitting, my stomach would feel horrible after eating, and it was harder to breathe so I would use my BPAP more often during the day.  At rest, my heart rate was in the 80s, but after walking a short distance, I would be out of breath. It had only been a month since I started sleeping over night with the BPAP and would not need any assistance during the day. I was even starting to get grumpy and more needy.

Over the past year, I have learned to listen to my body better. Everyday I notice a changes now.  As my ALS progresses, so do my limitations and with those limitations come symptoms. So after a few days of feeling like shit, I knew I had to go to the hospital.

After nine hours in the ER, I was off to my new room. I was quite surprised that the room was a single suite with in-room bathroom, couch, and closet. If it wasn’t in a hospital, you would think you were in a Holiday Inn. L and I was already feeling smarter.

Going into the hospital, I was smarter for all the reasons I spoke about in Chapter 14:  “Advocating For Your Life” . As Laura and I settled in, we knew from our past stay at a different hospital we were in for a fight.  I told Laura that I was scared and needed her to stay.  Over the next ten days, Laura, Nique, or Chantelle stayed 24/7 with me. We did not want a moment of communication failure.

At first the room and the staff were great.  The care unit was very familiar with ALS. This was important because as we found out in the past, lack of knowledge could lead to issues.  Day one I was immediately put on pneumonia medicine and saliva samples taken to determine the type of pneumonia.  The nurses were caring and seemed to be very attentive. However, as we settled in, we realized that most of the care was provided by Laura and the girls. When I needed suction or to pee, it took too long for the nurses to arrive so my family would take care of me. The nurse would take anywhere from 5 min to an hour for them to come in. The only sure way to get them in quickly was to set off the alarm to my trachea.

We realized again that advocating was required.  We did have a good doctor who address the pneumonia, but I also wanted to be seen for my stomach issues. After 6 days, we finally saw a GI doctor.  He was a good doctor, but once again communication between the staff was lacking. The next day the ward doctors did not even know the plan set forth by the GI doctor.

As a caregiver, you know your PALS better than anyone else and must fight for what is right for your PALS.  There was a day in the hospital where the nurse came in and stated that the doctors thought I had a perforated stomach and an infection. Then said they would stop my feeding until the morning. One thing I cannot do is miss meals. Right away, Laura told the nurse she wanted to see the doctors. Not once did they come in to perform a visual assessment, but they were making a prognosis anyway. That makes no sense and Laura let them have it. At the end of the day Laura was right, and we proceeded on with the care the GI doctor recommended.

As the ALS develops there are a few things PALS and Caregivers must know. Lung muscles get weaker which affects our ability to breathe and cough.  This issue causes fluids to stay in our lungs which develops into pneumonia and results in the need for assistive breathing. Other internal muscles affect the ability to defecate. The muscles in the stomach, intestines, and anus get weak causing constipation.  I have been dealing with this issue for two months and take a daily dose of meds to help. I’ve gone as long as 10 days which put the medical staff on alert. If you are a Caregiver, you have to monitor the time between movements as it could lead to serious issues.

These issues are exactly what my caregiver understands and must relate to the doctors when required. If not doctors can quickly misdiagnose something and you have a whole new set of issues.

Fortunately, because of the ALS awareness from the hospital, I was fed on time and conducted PT and OT while in-patient. I lost no weight, which is big, but I went from a cane to a walker for better support.  Every extended stay at the hospital will always take something from you.

Working with PT

Ten days after arriving, I was headed home again. My lungs were feeling better and my bowels starting to move again.  As we drove home I realized all the leaves were gone now. It was a little colder and winter was settling in. The loss of time while in the hospital not only affected me, but changed the world around me. When time is the biggest gift for a person who has time limits on your life, any amount of time lost - let alone 10 days away is hard.

Unfortunately, this will not be the last time I will have pneumonia or the need for a hospital stay again. I do what I can with my time and this blog is one of them. I have been so blessed over the past months to have friends and family visit. These visits fill my heart and time.  Talking about memories and creating new ones.  This is what I want to do with my time, as well as watch the Cowboys win.

TIME the one thing in everyone’s life you cannot get back. Spend it wisely, have fun with it, make it as important as your possessions. Because once spent it is gone forever.