Friday, February 21, 2020

First time Home Since January 3

I had my breathing crisis on January 3, 2020, which led to my tracheostomy in my throat and PEG feeding tube in my stomach through my abdomen.   Karrie and our son Mark have received training in tracheostomy care and all the many pieces of equipment and supplies are being delivered Monday.  I am going home with Karrie Monday evening.

It will be an adjustment time because Karrie will be doing my trach care and all breathing treatment needed with back up from Mark and our other adult kids all supporting her.  The tube feeding, meaning nothing by mouth, will also be Karrie’s responsibility.  This is a lot. So it is a joyful time, but I know it will be hectic and Karrie asks that for a few weeks at least no visitors outside of the immediate family.  We appreciate your love and support! Dan

Saturday, February 15, 2020

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.


Wednesday, February 5, 2020

Saved by a Trach

I have so much to share but it is not within my power to write all that has occurred.  I have long known my vocal cords, swallowing and breathing risk were big issues with the autonomic failure of MSA.  On Jan. 3, 2020,  I had a breathing crisis and was rushed to the hospital. While there, I struggled until I was near the end.   Karrie helped inform the doctors and nurses of the type of disease I have and they saved my life.  I was under heavy sedation and on a ventilator for several days while the family didn’t know the shape I would be in even if brought back.

I applaud Karrie and the wonderful physicians at Parkview Community who  determined a tracheostomy inserted and a PEG feeding tube placed in my side into my stomach were my best chance of survival and preventing the same breathing crisis from recurring.  I am now in a rehab center full time with experts in learning to use a trach full time and gastric feeding (liquid  only) situation.  Family training is involved and my sons, wives and grandkids have all been so supportive. Thanks to all our closest family, friends and church who have sent love and prayers our way.

I am here by the grace of God, the miracle of science and dedicated medical professionals.  Thank you most sincerely.  Above all, I miss my sweetheart who visits me every single day.  We will go on  in mutual love and shared faith.  Karrie and I would not have pulled through thus far without our great, and I mean great sons, their wives and our grandkids.  We love you all.  Thanks to my brother Matt and wife Lillian for all the visits and caring, as well.   “I can do all things through Christ who gives me strength.”— Philippians 4:13  Dan Brooks (patient-online)