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| With Karrie, In December before my Tracheostomy Operation |
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."