Calm Week with Questions

With all the trouble with my trach lately, it was nice to have a calmer week. However, I did visit my ENT on Thursday again. Since it was my third visit in three weeks, I wondered if I could get some sort of frequent visit perks. Unfortunately, no such options are available. He slightly adjusted the button to be further out, but I hope to not see him again for a few weeks.

Biking has been my main oddity this week. For the past several months, my legs have consistently pedaled for at least a few minutes without the motor's assistance. I have biked four times this week, and three of the sessions have had unusual reactions.

Twice, my left leg has been jerked with spasms much more than usual and I can see my foot even pushing and flexing much more than normal. However, it doesn't register as anything productive on the bike's electronics and at the end of the session, I only recorded 12 seconds of peddling on my own. One time, my legs decided to be energetic and, for a few seconds, peddled at 54 RPM instead of the set 30. For the entire 30 minute ride though, I only recorded a little over two minutes of not using the motor's assistance.

Since I can't feel my body, I can only monitor and guess at why things happen. During biking, I've also noticed other irregular reactions such as sweating. One thought I had was my pressure sore getting irritated and perhaps painful. The wound did get worse a month ago, but it doesn't look red or having extra problems. So far, it is only a mystery that I will need to keep investigating.

This coming week, my parents are again taking a week-long vacation. It's rare they go out in summer, especially twice in less than a month. However, it's just how my caregivers are available and they likely won't be able to go anywhere this fall as they have before. That means I will have the house to myself again while figuring out my body's oddities.

Such is the quad life with strange reactions. I will continue to learn and be thankful for what God has allowed me to do.

In, Out, and In Again, Trach Trials

The last week has had highs and lows, along with a couple in and outs. On July 13, I visited with my ENT as planned and anticipated going back to a trach button. After looking at some options, we decided to go back to using the same system I had in place for seven years, but had stopped in December. He carefully removed my trach, placed the button, made sure it was sitting correctly, and all was good.

Once again, it felt great to be free of trach ties, the rubbing in my throat, and improved speech quality. However, good things may not last very long. On Wednesday, July 19, my night nurse thought the button looked like it was falling in again. My day caregiver and I evaluated it Thursday, and thought it didn't look bad and it would be okay until my follow-up appointment in August. Friday morning it looked worse though, so I contacted my doctor about getting checked.

After a series of phone calls, it was determined I should meet him at the ER in Des Moines for when he finished scheduled surgeries. They wanted me to me the hour-long drive in 30 minutes, but I quick finished lunch, headed to the city, and arrived about 1:30. Once I was checked in, I was told to go back to the waiting room as all beds were full. Therefore, my caregiver and I stayed in one spot while people with various ailments, including major "upset" stomach, sat around us waiting.

Bored in the ER

Around 5:30, after dad came to relieve my caregiver who never got lunch, the doctor found me in the waiting area and wondered when I arrived. Apparently some paperwork problems never alerted him to my arrival and we had both been waiting for four hours. He evaluated my button again, took it in and out a couple times (without pain management), and determined the skin needed to seal up the area. My ENT made an improvised dressing, put the button in place again, and it felt fine.

Dad and I drove home, picked up supper, and we were at the kitchen table around 7:30. When I got out of the van, I noticed something didn't feel right and I had a hard time talking while eating. Upon investigation, dad discovered my entire trach button was out and only my shirt was holding it in place.

This started a few attempts to try to reinsert the button, but it would blow back out with another breath. Finally, dad removed the impromptu dressing, pushed harder, and everything was back in place. The first time dad had seen the button out was just a few hours earlier in the ER, but he did very well with reinserting it and me hardly able to help. However, I'm now back to where I was Friday morning. Also, the button does better when I sit, but my skin needs me to lay flat, so I battle which issue to address and to be upright or flat for longer periods.

I'm scheduled to preach this evening at a local church. I am thankful I start reviewing early, but this entire saga has my mind distracted. Living the quad life indeed has unexpected times, but I'm thankful for all the people God has put around me that can adapt quickly as needed.

2000 miles with more added

In July 2015, I first used an FES bike at Younkers Rehabilitation in Des Moines. It was a great experience that I was thankful I could enjoy. Now, eight years later, it's still an activity that keeps on giving.

I have written frequently about the benefits of biking. Late in 2022, two of my skin sores were officially declared healed. When I'm able to bike, my skin tends to do well. A month ago, I wasn't able to get on it for a couple weeks and my remaining sore became much worse.

Every Monday, I receive a summary of my previous week's bike sessions as well as a total of all sessions. The latest report showed I have officially pedaled more than 2000 miles in 609 sessions. According to Google maps, I could get from my home in Iowa and go to either Seattle or Los Angeles and still have miles left to go around the city. Alternatively, I could nearly make a trip to New York City, or Houston, TX and back. Averaging more than three miles per session, these would be very slow trips, but they at least happened.

When many people look at my legs, they may think they never move or do much of anything useful. However, they have done a fair amount of pedaling under their own power. In a 30-minute session, I've

seen them do anything from 0 seconds to more than 11 minutes without the bike's motor assisting. Looking at the graphs, it's a very bumpy roller coaster for how much they do (red line). It isn't at all close as to how other cyclists perform (blue line), but my legs have been lazy for several decades. Getting them to do anything productive is a reason to rejoice.

However much time they give, I'm thankful God has allowed me to use this technology. As I said initially, this is something that wasn't even dreamed about when I was injured. God has used this to increase my muscle tone, decrease muscle spasms, increase circulation, and help improve skin problems.

With my parents gone this week and having extra caregivers, I was able to bike three more times since the latest report. Adding more than nine miles to my total is fun, and I look forward to seeing how long God allows me to use this device and everything done through it.

Relaxing Busy Week?

The first full week of July is now complete and it was a good start to the month. As with every turn of the calendar, I prepared new virtual paperwork, calculated my hours worked, and reported my income. June was blessed with about 10 hours of work over the 30 days and July may be around the same. It also helped that I didn't have any scheduled outings and could stay home, bike, and take care of other needs more easily. This coming week does not look the same though.

After a few months' of planning, my parents actually get to go on a trip. All my hours are covered with caregivers and they can do their own thing. It's rather evident the break is needed as well. On Saturday, dad finished some of my personal cares and, as usual, went to clean everything up. However, he forgot to return and set me up with the computer and replace my protective pillow between my arm and DPS port. When I heard him start vacuuming as I laid waiting in bed, I was able to get mom's attention while she could hear me.

With my parents away, I was looking forward to a calm week with the house to myself. However, I looked at the calendar more carefully. I realized I have two days with doctor's appointments and two more that are full with virtual meetings. Therefore, my free week will actually be just one day that doesn't have scheduled activities. At least with an evening caregiver, I'll be able to get in my chair and bike more often.

On Facebook, I'm friends with other quadriplegics and their families. One is a mother and her 23-year-old son who has the same care needs as me, plus further challenges. For the first time in 17 years, they recently started receiving nursing care for four hours a day a couple days a week. This isn't an uncommon situation unfortunately and in this case, mom is also having extreme pain and can't get relief for herself.

I'm very thankful God has blessed my family and I with so much help. I pray that all those living the quad life can get more help, and that caregivers can get relief. As I go through another active week, I will also give thanks for everything God has allowed me to do.

A Day Trip, and No More?

Last week Saturday, June 24, was the annual Galesburg Railroad Days in Galesburg, IL. Since 2021, it has become an annual trip that Dad and I make for a fun day of trains. We left home early Saturday morning and made the three-hour drive to get in line to enter the model train show.

Shortly after entering the college field house, a ticket number was called for the door prize. As dad looked at his ticket, the announcer red the same thing he was seeing. Therefore, we returned to the entrance to claim our prize, a full loop of track, controller, and short train set. It looked similar to what some people have around Christmas trees and is a great starter for those new to the hobby.

All week had been very warm in Iowa with Saturday not any different. The forecast for Galesburg that day was sun, thunderstorms, and a high of 91°. As we roamed around the building looking through various vendors, the heat in the crowded, non air-conditioned building continued to rise. After nearly two hours of looking at model trains, and carrying around our door prize, we purchased a couple good deals and departed.

Instead of returning on the route we had came, Dad thought it would be fun to go through Ft. Madison, IA. I liked the thought of watching trains in the river city, so we started to navigate to the town, with a very sparse map. Using our compass and guessing our approximate location, Dad picked roads that were going the correct direction. Unfortunately, my nearly 30 year-old van does not have good air conditioning. As we traversed very rural roads with nothing in sight except fields, I continued to be on the border-line of overheating.

It took nearly two hours to navigate the 70 miles between the two cities, but we made it. Our first stop was to watch a train we had followed into town. Doing so, we were also seen on Virtual Railfan's Fort Madison railcam and received an alert from my uncle of sighting us. Next, we found a local ice cream shop where I gladly ate a dish of plain chocolate ice cream to try to cool down. We stayed in the railroad magnet for about an hour before starting our remaining two hours home.

Finally, about halfway home, we ran into the thunderstorms we knew were coming. The downpour of rain sometimes made driving a challenge, but it provided a welcome decrease in temperature. After several hours of being too hot, it was nice to cool down. Unfortunately, my nearly healed final pressure sore did not fair well and nearly doubled in size. Therefore, some fun outings I had in mind for this summer have been delayed and will likely be canceled.

Living the quad life has challenges in many directions. I'm thankful I was able to spend time with Dad on a hobby we both enjoy. However, I should have been better prepared to deal with weather conditions and check my body more carefully before many hours in my chair. I do now have two more model train cars on my track and a kit to use in some way. Now, I look forward to a slow week for outings and more recovery at home.