Still Going On

January 3, 2020 was a day that changed life as we know it forever.  You will need to go back and read my last entry to have the basic outline of that crisis because I am going to fill in the blanks with this additional narrative. As they were attempting to save my life, and I was on the brink of oxygen deprivation, I looked at Karrie’s loving and concerned face one last time and she at mine.

Since I could not move a single finger or move my mouth to speak, I hoped somehow my eyes would show my need for help and she could convey this to the emergency room staff.  Somehow she knew and when she said “He can’t get air”, they put a large instrument down my throat and then an intubation tube.  Next I went to ICU and discussions ensued.

Karrie and my soon to be surgeon were discussing the conditions that caused my vocal cord paralysis and from Karrie’s explanation, he knew exactly what Multiple System Atrophy was and how it could stop the body’s ability to get proper signals from the brain thus interfering with a person’s ability to breath.  Thank God for this doctor for whom it all clicked.  Also, my own ENT doctor came to see about the situation and contributed a good deal of information about my brain disease affecting my vocal cords.  It was determined the best route would be a tracheostomy with a feeding PEG tube inserted directly in my stomach to prevent the future reoccurrence of the inability to get oxygen or choking on food and liquid which I had been experiencing severely for years.

As I was then put under heavy anesthesia to keep me safe from removing any tubing, I was put on a ventilator and waited out the weekend for a three day stretch before I could be operated on. The surgeon opened a hole in my trachea and inserted a tracheostomy.  During this time I saw and was aware of very little.  I was fighting for life and at times had to be restrained as I unconsciously would attempt to pull what to me were foreign objects from my mouth.

I had pneumonia and fever following my two simultaneous operations, the trach and the feeding tube insertion into my side.  I contracted a staph infection and they had to check my heart function, which through all of this was doing great.  My sons, our daughters in law, Karrie and my brother and his wife all hoped when I made it out of all this that I would still be me and have my full capacities.  Several close friends came by during my hospitalization, for which I am deeply appreciative.

Some great doctors, nurses and staff did and decided so many best practices that led to my successful surgeries.  Now I had my trach in place and my PEG tube, but I wouldn’t be finished fighting.

Next, I will tell you about my dream state from anesthesia and the delusions that followed me for weeks until the medicine all worked it’s way out of my body.  Also, a few weeks later while at the rehab hospital, I had to be sent out to a nearby hospital to have my dislodged PEG tube replaced through surgery.  I will chronicle these and other accounts with my next blog posting.

As I close, I must add that I had no idea how much my family went through until weeks later when through conversations they helped sort out my dreams from their reality of what actually happened.  I don’t write this account lightly thinking it isn’t hard for my dear ones to relive.  They went through so much worry and wondering if they had lost me.  I am so very thankful for all who stood by me, especially Karrie and our beautiful family. — Dan
“I know the plans I have in mind for you, declares the Lord, they are plans for peace, not disaster, to give you a future filled with hope.”— Jeremiah 29:11 (Common English Bible)

Below:  Karrie in my room at the rehab hospital where we learned about caring for and living with a tracheostomy.