Latest News and Stomach Surgery

It has been an exciting summer as we have also turned to fall.  I went through the change of trach tube from uncuffed to cuffed, with the aim of using the ventilator each night as I sleep.  This process has gone off without much of any hitch!  The ventilator paired with my Portex size 8 cuffed trach tube has worked out beautifully. I am really benefiting from the ventilator.  I sleep much more deeply, wake for shorter periods, and most importantly, breath so much better with the ventilator attached to my tracheostomy tube.  

Our second book, FURTHER ALONG, got off the starting line with a burst of online sales, thanks to all of you.  I have recouped about half of our original expense in publishing, although I haven’t been happy with some of the minor errors not caught by the professional editors.  For this I apologize, and am getting the books going to the shelves improved with these minor errors fixed.  It is hard to write and see everything that is mistyped in such a long document.  The pros should catch things but with all books errors occur.  I am reminded it is the content and the message you want to get out that matters most.  Being there to help fellow patients and their caregivers, to lift and encourage, is my aim.  

The PEG or G Tube, needs to be moved. As you know, the last one ruptured injuring my stomach where the tube enters this vital area.  It was replaced, helping some, but ultimately needed a surgeon to actually move it to a fresh, healthy location.  My feeding tube is long-term due to swallowing difficulties resulting from faulty brain signal confusion, coupled with vocal cord closure on inhalation. Breathing and swallowing difficulty together cause a need to have a stomach feeding tube.  Do I miss food? Absolutely! 

I have surgery scheduled to go in and excise the tissue that is damaged at the old site (removal of a small portion of my stomach), and relocating a new feeding tube where it will have a much better chance of avoiding further injury and/or infection.  Infection is the main culprit of degenerative brain disease demise. Infection with multiple system atrophy can occur in the stomach, lungs, and bladder, among other locations.  Also, the ventilator at night helps to avoid respiratory failure during sleep.  

Thanks for keeping up with my sporadic postings and for all the support in promoting my book.  Happy Holidays! Dan

“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