Singing with A Passy Muir Valve

I have been working at playing music after my trach operation. Generally, I try to stick with just instrumental material because of the coughing that it causes.  Occasionally, I will be recording a vocal, such as this song I am posting today.  I am using the Passy Muir speaking valve.  This allows air in, but prevents it from exhaling thus pushing the air up through my vocal chords to produce sound.  These valves cannot be used with a cuffed trach, which is the type I had when I first had surgery.  Speaking with the cuff inflated made me silent and my family couldn’t hear me.  Once I had an uncuffed trach, I was able to speak and sing with the Passy Muir valve.  I hope you enjoy my song, written in 1974 but recorded this morning!  — Dan

 https://youtu.be/nwpbzffcGY0

Starting Book Number Two

It is time.  I have more stories to share and want to put them in a book.  Some interesting and painful things occurred in going to two physicians 10 years ago. I will write about them using fictitious names to avoid harming anyone, but rather to delineate the difficulty of being treated for a rare brain disease such  as I have. These did not include the specialists and Doctors I was diagnosed by originally or those I have today. Hard to believe the specialists I will write about were so clueless about how to respond to a patient in my situation.  These two are not from RMC or Loma Linda and I have spoken little publicly about their treatment of Karrie and I when we sought second and third opinions.

Also, much has occurred since I WILL GO ON was written and published in 2009.  I have had brain surgery with an extraordinary neurosurgeon, and a great new neurologist/movement disorder specialist at Loma Linda University.  Most importantly, to write about how early this year (2020) I nearly died in the emergency room and was saved by the quick thinking of my wife, Karrie, and wonderful doctors and medical staff at Parkview Community Hospital.  My experiences during my time in the hospital, and subsequently in the rehabilitation facility for 6 weeks,  followed by the time of adjusting to a new normal at home as Karrie and I adapted to the tracheostomy and PEG tube feeding are stories crying out to be written. 

“Farther On” is chosen grammatically speaking because “further” speaks of literal distance and “Farther” of metaphoric progress along a continuum.  Farther On is the sequel to I Will Go On: Living with a Movement Disorder, and I hope to complete and publish it early in 2021.  

More news about my writing progress to come.  Thanks for reading.  I will end with a relevant, and one of several favorite Scripture references. -- Dan

Philippians 3:13-14 "Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Jesus Christ."

Home 7 weeks - Healing Progress During COVID-19

With Karrie, In December before my Tracheostomy Operation

I was in the hospital 11 days and in the nursing home 6 weeks.  I didn't know what to expect when I got home, though Karrie did so much to prepare the way for me.  Our home is set up so well, with a hospital bed, the IV pole for the feedings through my tube and a cart for the tracheostomy supplies.  Karrie is so organized!  We moved some guitars and mandolins out of our second bedroom closet and Karrie made a storage area for the boxes of liquid food, trach supplies and it amounts to a bunch of materials!

We are adjusting well.  Karrie has the trach care down, as well as the feeding process.  The trach requires an AM and PM servicing.  She does the following:

Morning:  removes debris from around the stoma (hole in my throat), removes and replaces the inner cannula, suctions the trachea as needed, and removes and replaces the trach tie that holds it on my neck.  She cleans the area around my stomach tube (PEG) with a Q tip and saline water.

Evening:  removes debri from around the stoma, suctions the trachea as needed.

Monthly:  The actual trach tube that holds the inner cannula has to be completely replaced.  Our ENT doctor does this but the last time we went he trained Karrie and she removed and replaced my tracheostomy tube, which is daunting! She did it well and we feel confident that it will be doable in the long run.  It means taking the old one out which leaves just the open hole in my throat, and then she puts a tiny bit of lube on the tip and carefully guides it in, while exerting some pressure.  This process is mildly uncomfortable but I am used to it now having had it replaced 3 times now.  It was one of my biggest hurdles but I feel confident now that it is fine.  It is something you can't "take your time" with because it will close itself after a while.  We need to get right on it once we take out the worn trach, or I could have trouble breathing. 

With regard to feeding, there is nothing by mouth-- and here is the process:  Three times per day Karrie hangs a bag on the IV pole with a tube for attaching to my stomach tube that has a valve on it, that closes and opens.  She fills the bag with 700 calories of liquid (looks like a peanut butter shake), and then opens the valve at the bottom on the bag and it drips into my stomach for 40 minutes.  At the conclusions she uses a large syringe to pour medications crushed and mixed with water into my stomach tube.  At the end she pushes the syringe with clear water and it removes the left over food and liquid putting it in my stomach.

These processes are time consuming and we are very much home bodies, with or without  COVID-19.  We will always have these things to do.

I am a trach patient and it is on top of the fact that I have a Parkinson's Plus condition called Multiple System Atrophy. I still have movements difficulties such as tremors and walking struggles, in addition to all the autonomic issues including the dropping blood pressure called Orthostatic Hypotension.  Two weeks ago I had my Deep Brain Stimulator implants generator replaced in my chest.  This system, which sends a flow of electricity into my deep brain in two places through implants is still very helpful to me and I have had this now 8 years! 

This whole new way of life is hard to get used to, but like one of my friends told me, "It's your new normal."  I am still human, though I fear the shortening of my life.  I have greater faith than ever that my life is in Christ and He has plans for me on this earth.  I was saved from dying on January 3rd, 2020, and I am so grateful for His grace extended through the doctors, the nurses, staff and of course, my wonderful wife and sons who supported me along with their great spouses, whom are like daughters.  Our grand kids sent me pictures and letters which lifted my spirits greatly.  Many friends and family prayed for us and continue to do so. Thank you!

Being home but isolated due to COVID-19 has been very trying.  It is worth living having the feeding tube and trach, and while some reject them, I chose life.  I had talked to Karrie before my emergency many times and she knew I preferred to live on, especially because of our family and sweet grand kids.  They are my purpose now.  I still play my instruments, but singing brings pain in my throat so I am trying to limit it to a minimum. This is a great loss for me.

I appreciate you keeping up with my blog.  It means so much to me.  Dan

2 Corinthians 4:16-17 - -  "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

Easter Song for Good Friday

I recorded this video shortly after DBS brain surgery in 2012.  — Dan

Singing with a Tracheostomy

Hi Friends,  I didn’t think I could sing with a tracheostomy.  I have a Passy Muir speaking valve, which allows air in through my tracheostomy, but to exhale it travels past my vocal chords.  Without this I cannot sing, where with it I can sing a bit. Here is my rendition of “Give Me Jesus” by Fernando Ortega. This is my first performance since having a “Trach” put it in.  The tracheostomy results from occasional vocal chord paralysis.  Also, my swallowing problem causes food and drinks to slip into my lungs, so now I eat through a tube in my stomach.  These conditions result from Multiple System Atrophy, an Atypical Parkinsonism disease.   Here is the video.  Dan Brooks

To hear more of my videos go to You Tube at “Danstune’s Channel.”

“Storms” - A Poem from an Old Friend

Some friends last a lifetime.  Gary Edwards and I met in Jr. High church school on a Sunday morning at Lakewood First Presbyterian Church.  As we grew we influenced one another as Christian believers and shared many activities including backpacking and music.  We eventually performed  for a year at various events when I began writing gospel songs. Gary sang harmony very well and played the bass to back my acoustic guitar.  Neither of us had much and we shared meals that we found cheaply or Gary’s dad allowed me to eat at their home where we would grab toast and granola.  We split the rent on a single room apartment in our city’s run down area, which came to $47.50 each per month.

We moved on in life, both of us becoming public school educators and each married with kids of our own. During my recent breathing crisis leading to the emergency tracheostomy to allow me to breath and stomach tube for feeding, I heard from Gary and his wife Sue, who is also my friend from our Long Beach church youth group led by Pastor Jay Bartow. His concern for my near passing from this crisis and the subsequent extended placement in a skilled nursing facility, inspired him to write this poem that Sue helped edit.  I would love to share it with you, my friends.

Storms 

When storm clouds gathered, you told how you’d fret!

Now you’ve been through storms so hard to forget.

But in the midst of the storm, His  shelter you seek.

When the thunder roars and the lightning streaks. 

The storm rages on and on, and you long for peace.

Praying for many years for the wind and rain to cease.

Keeping faith,  looking up , and then the skies do  clear.

God hasn’t changed,  all is calm,  and there's nothing to fear.

You’ve gone through many storms on the sea of life.

You’ve shared with me your heartaches, your sorrow, and strife.

You’ve shown me how  to trust in Jesus, and in Him you abide.

Sharing with me that all through the storm, He's by your side.

Thank you for sticking with me in storms of health,

My car accident modeled your love that brings His wealth.

Knowing that in the Storm and pain,His comfort He brings

As He gets us ready for eternal things.

Praying for you each day as torrents do fall

Showing that in the drought when there’s no rain at all 

His harvest in your life is a spiritual flow

The Son is shining in you, whether or not you know....

With love always, Gary and (Sue)

Thank you to my lifelong friends for the gift of this poem and the genuine concern and love it represents!  - Dan

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

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.

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)