My apologies for the delayed update on this blog, but so many things have been happening, including radio membership campaigns, illness, many doctor appointments, and a visit from my daughters and grandson.
Spirits lifted with family visit
During the first week of November, my spirits were lifted by a visit from my two daughters and my grandson. My daughters, Erica (and her boyfriend Dan) and Emily, and my grandson Caden came all the way from Orlando to spend about a week with me at home. While I was unable to do many things that I wanted to do with them, we were able to spend lots of quality time together.
Emily and Caden were treated to a half-circle tour of O’ahu by my father-in-law, Bruce. They got to see many of the beautiful sites that this island has to offer. It was Emily’s birthday, and we treated her to a family meal at our favorite Mexican restaurant, Margaritas.
I gave them a tour of Magic Island and the Hilton lagoon, and we returned to the Hilton lagoon because Caden really wanted to play in the lagoon. Unfortunately, our day was hampered by a downpour of rain. We made the best of it, and ended up enjoying lunch together.
While it was a very emotional visit, having my daughters and grandson with me, even for just a few days lifted my spirits and my soul, it also filled my heart with joy and love.
Feeding tube procedure
Last week, I went in for a proactive procedure to have a low-profile feeding tube placed in my belly. While I still have the ability to swallow and eat food, having the feeding tube already placed allows me to receive additional nutrition when needed. When the time comes that I am unable to swallow, the tube will allow Jennifer to feed me through this feeding tube.
While the procedure ultimately went well, we did have an issue halfway through the procedure. I suffer from an issue called vasovagal syncope, which causes my heart rate and blood pressure to drop suddently when I feel extreme anxiety during any type of medical procedure. This, in turn, causes me to pass out. I have passed out on many occasions at doctor and dentist visits.
Despite always warning medical personnel about this issue in advance, they’re always caught off guard and think the worse when it happens. Just as the doctor started the g-tube procedure, and because I only had topical numbing, I began to fill anxious about the procedure and my blood pressure started to drop, and sure enough, I passed out. This scared the dickens out of the doctor and nurses around me, and they halted the procedure. Once I came to, the doctor wanted to postpone the procedure, but I insisted that they continue the procedure later in the day, but with anesthesia. It made for a very long day at the hospital since we had to wait four hours to re-attempt the procedure with an anesthesiologist. Once they restarted the procedure and I was enjoying the “happy juice”, the procedure was completed without any additional complications.
I spent the next few days recovering at home with Jennifer, and learning how to flush and clean the feeding tube.
Renovations are finally underway
The bathroom renovations, which we have been planning since this time last year, finally started last week. We are converting the bathtub to a curbed, walk-in shower to allow me to roll into the shower with Jennifer’s assistance. We’re also adding a new toilet with a built-in bidet. We expect these renovations to be completed by year’s end, which will be a welcomed asset to me.
Additional equipment support
After a recent reading test showed that my breathing capacity had dipped a little (but still within normal range), my pulmonologist prescribed a trilogy breathing machine for me to use when needed. The machine will initially be set-up for sip ventilation (kind of like a straw for breathing), which will allow me to suck in a breath or two when needed. We’re still in the process of having the machine ordered and delivered, but it will be an important piece of equipment to assist me when needed. I occasionally find myself out of breath if I talk too much, but otherwise my breathing continues to be fine.
We’re also working on getting an eye gaze machine ordered for my use. Currently, I’m using voice-to-text technology since I am unable to use my hands to type. Because I’m using my voice more to write emails and memos, I experience voice fatigue and loss of breath. Having an eye gaze machine allows me to use my eyes to scan a keyboard to type out messages. If and when I lose my voice due to ALS progression, the high gaze machine will allow me to use my already banked voice to communicate.
Technology with high gaze machines has really advanced to the point that it will allow me to control my computer at work and other devices at home. We’re currently working with my speech pathologist to work up the order to receive the equipment soon.
I also started using an external catheter a month ago. We first were paying for these catheters out of pocket, but thanks to Jennifer’s determination and with help from my medical team, we’ve just received a three-month supply covered by insurance. The external catheter allows me to go to the bathroom when needed and wherever I am, giving me peace of mind.
Mahalo to everyone
I want to thank everyone who continues to send me notes, emails, and cards of encouragement and love. They mean an awful lot to me. I also want to thank my “lunch buddies” who have come to my office to help feed me. And, Jennifer and I thank the amazing team of friends, family, and colleagues who continue to provide meals during the week to help us take the load off Jennifer from one additional task she has to do.