Closing Wrong Hole

When you use unique medical equipment, you should expect odd things to happen. I used a regular trach for 30 years. In 2015, I switched to a trach button and have primarily used it since. Now, I am the only living person I know that uses such a device.

The button consists of two parts, an outer cannula that stays in place and a closure plug that inserts into it. In order to suction, the plug is removed and then the cannula keeps everything open. On Monday, my caregiver went to clear out my lungs and removed the plug. However, I couldn't tell it was out.

Normally, with the plug out, I'm unable to talk due to an open hole in my neck. Since I didn't notice the plug was out and could talk normally, that meant something was blocking the end of the cannula. Suctioning wasn't a problem, but  The same thing happened Wednesday and Thursday. Therefore, I called my ENT and they were able to work me in Friday.

After explaining the situation to doctor, he put the familiar scope through the button to see the end had grown over with granulation tissue. With my pesky persistent pressure sore problems, I take a couple meds to promote skin granulation. They don't seem to help my ulcer, but apparently granulation happened at the end of my trach cannula instead.

I was halfway expecting him to say I needed surgery to clear out the area. It may still be a possibility, but for now, I'm using medicine instead. Three times a day, for the next two weeks, we have to put three drops of a steroid inside the cannula. The hope is that this will clear out the blockage and restore regular function.

As I write this on Saturday, I have had three treatments. Just this morning, I noticed a little air escaping when the closure plug was removed. That means a small opening has already developed and the medicine is starting to work. That's great news, and I hope it continues. When I start feeling the drops go directly in my lungs, I guess it will be cleared. No matter what though, my doctor said to continue the full coarse of treatment. I'm scheduled to preach next Sunday, so it could be interesting if my lungs don't like the drops.

Living the quad life definitely runs into unique situations. I'm thankful God has given us medicine to help with problems in this fallen world. In some ways, I can also learn from the situation and help someone else if they also look at a trach button. Hopefully no unexpected doctor's visits this week, but I never know what tomorrow will bring.

Making Progress in a Busy Week

The last week of October was full, with something scheduled every day except one. With the week complete, my trips to Des Moines should be done for the year. I would like to say I accomplished a lot, but I don't have much to show.

Sunday was a great time back in church after nearly three months away. We had two baptisms done in a different style than I've seen before, but was thankful to see in person. Next week's entry may have more thoughts on this.

After a scheduled phone conversation Monday, Tuesday was a full day in Des Moines. After ordering my new wheelchair in late May, it was finally time to pick it up, at least that was the plan. My caregiver Sara and I arrived about 9:30 in the morning and didn't leave until after 2:00.

I sat in my new chair for most of the day as the technician adjusted various points to get them just as I needed. While he worked, another technician worked on the electronics and getting them set to how I wanted and could use everything without outside help.

Unfortunately, we ran out of time to get all the changes complete. We planned to bring the chair to my house Wednesday to finish, but I received a call that still more time was needed. At one point in the day, I was told this was the most complex chair they had ever worked with. I have seen setups somewhat like mine before, but I guess not done by this company in Iowa. Much progress was made, but I don't know when setup will complete and I can start using my new wheels. Whenever I do, that will be a long entry to cover changes.

Wednesday was my "day off" from appointments and I could get caught up on web work I was doing in the evening. Thursday, I was again off to the city. What was originally going to be just a visit with my dermatologist, also turned into equipment exchange. The doctor thought my skin was doing well, but my continuing pressure wound doesn't heal, or get worse. He keeps trying different treatment and I change positions frequently, but it refuses to fully close.

After the doctor, Sara and I found the place where I order my equipment, but never visited. An hour after arriving, we finally exchanged my pulse/oxygen monitor that I use all night every night. The loaner turns on and shows my stats, unlike its faulty replacement.

Friday was another day at home, but consisted of web related work and video training a client on how to make their own updates.

I am very thankful to be able to live an active quad life, but also like breaks. I'm scheduled to preach once in November, but that is my only planned excursion out of town. I have projects in mind as I transition to winter hibernation, but I'll wait and see if I have time, and energy, for them

A Weighty Issue

Since early August, I have been recording multiple nights per week without help. Thankfully, my second night caregiver was able to return and I once again had a fully filled schedule. It has been nice getting to go to sleep a few hours earlier, but I'm especially thankful to see my parents get a full night's sleep again.

Like most people, I get an annual physical. However, it is usually a very boring appointment that just consists of chatting and answering a few questions. This year, I worked with my doctor's nurse to arrange it so I could get weighed. It had been over two years since I last updated my weight and that was for surgery.

The nurse found a wheelchair scale at another doctor's office, but within the same building. I met her at the planned time and location and I was soon parked on the measuring device. It is difficult to get me in and out of my chair, so we just weigh everything at once. Due to the surgery in 2023, I know what my chair and equipment weighs. Therefore, it's just a matter of subtracting 393.5 pounds from the total and we have my weight.

In just over two years, I have gained six pounds. I was also wearing jeans instead of a gown like last time, but it's likely close enough. I have noticed my belly sticking out more when I sit, but I attributed it to my gut problems that seem to frequently occur. While that still may be some of it, that likely isn't the only culprit.

Granted, 121 pounds for a 5'3" man in my early 40's is well within the normal range and not a major concern. However, it is very hard for quadriplegics to lose weight and obesity is an issue that many quads deal with. The heavier I am also makes it harder for my caregivers to move me around. Therefore, I need to be more careful of what I eat and try to burn calories however I can.

On Friday, my legs did well on the bike with pedaling for nearly 8.5 minutes on their own. Unfortunately, this activity only burned 0.3 calories according to the machine's computer. Therefore, I need to make sure to keep typing by "hand" as much as possible and maybe try head lifts or something for further exercise. I already eat very little for candy or sweets, but maybe occasionally skipping my nightly protein or fiber bars before bed may help.

Such is the quad life. I'm thankful that my doctor's office got it arranged so I could get weighed so I know what's going on. It's likely I'll get my new wheelchair this coming week as well, which will require learning how much it weighs with all my stuff on it. Now I can join the multitude of watching calories more closely and see how I do whenever I get weighed again. 

I Miss Church

Friday night, after dad got me ready for bed, I laid awake with thoughts going through my head. We had hoped to have nights covered this weekend, but it didn't happen. My night nurse will hopefully get released to work soon, but it hasn't happened yet.

Before dad came at 1:30, and while laying flat, I read several pages in Foxes Book of Martyrs. I'm currently reading about the inquisitions of the Roman Catholic church around 1650. Many Christians refused to disobey God by bowing to statues, praying to saints, and other unbiblical requirements. As a result, they were killed in a multitude of torturous ways, but they would not give in.

Being with other Christians can make for encouragement during hard times as well as assurance of faith. I've seen several reports of church attendance being increased since Charlie Kirk's assassination last month. It shows people are curious about his faith, turning to Christ, and looking to learn from churches.

It has been since August since I last attended my home church in person. I preached a few weeks earlier about the importance of fellowship and especially joining with those who can't get out easily. Unfortunately, I've had very little communication from anyone in my congregation during this time. I very thankful for weekly emails between another member and I, but she has mainly been all.

I look forward to being able to sit in the church building and participate in worship again. Not many people talk with me, nor I with others, but it's at least comforting seeing friends in person. As my head meandered through thoughts, I remembered our previous church facility. Waiting for the elevator, it was a great opportunity to fellowship with everyone around and typically see the same faces each week. 

The elevator was primarily used by those with advanced age, so it sometimes was fun to hear their thoughts on different topics. Many of those from the elevator corner have either passed from this life or are no longer able to get out. 

Our new facility is flat and doesn't need an elevator. It's very nice for accessibility, but takes away the gathering spot I was enjoyed.

Hopefully in another week, or two, my family will be able to have full night coverage and can return to in-person Sunday morning worship. Such is part of the quad life, but it makes me thankful for all my remaining caregivers as well.

Best Ideas, Different Results

Last week, I wrote about upgrading my computer and getting caught up with my friend John. The post concluded with a note that I would be making a few simple changes and all would be well. It has been another week and the planned adjustments did not go as expected.

Shortly after I finished scheduling last week's update, my Dell monitor arrived, along with a new webcam. Dad carefully removed the ASUS screen that John had installed and connected the required cables. Next, the new webcam was unboxed and plugged in. It all sounds good, but this is when the problems started to appear.

Since John originally unboxed the ASUS monitor, it was a struggle for dad to figure out how to get it packed for a return shipment. However, after a few attempts, he nicely figured it out and had it boxed nicely and ready to go. While dad worked on the old screen, I noticed the computer's voice system wasn't working. I could yell at my computer, but it wouldn't respond.

I did some research and soon found that my Mac Mini requires external speakers for voice control to work. Since the ASUS monitor included a webcam, it had a speaker that was picking up my voice. Therefore, I searched and found a speaker to add to my increasingly complicated computer. However, my new camera also wasn't working.

With all the parts and plugs, my Mac Mini ran out of plugins. I knew this would be the case, so John ordered a hub, or extension, to add more plugins. It's the same idea as a plug-in strip, but with computer outlets. After several attempts, it was determined the hub wasn't working correctly and could only take one item at a time. This defeats the purpose of a hub and therefore meant I needed to order more parts.

Webcam takes good pictures

Amazon was prompt in sending the speaker and dad graciously rearranged plugs so it could connect to my computer. The sound coming out of it was great, but despite my best efforts, it didn't solve the voice control issue. My night nurse and I looked further, and the speaker didn't include a microphone. Therefore, rather than trying to order multiple speakers in hopes to get one that worked, I concluded it would be best to go back to the ASUS monitor. Thankfully, UPS hadn't picked it up yet and I cancelled the return.

Tuesday night, after dad went to bed, my night nurse and I unboxed the monitor dad had carefully packed away and put it back on my computer stand. The Dell monitor was then packed up and made ready for return. It took three days for dad to notice the switch and that some of the wires he carefully tied up had been undone.

Now, I wait for the new hub I ordered to arrive. As it currently stands, I can use either the webcam or voice control, not both. This has been quite the learning curve in a few aspects. First, I know better what does and does not work for computer components. Second, I've learned what my quad life helpers can do with electronics and who is willing to help. Hopefully next week will have everything functioning and moving on to different topics.

Computer Upgrade

I am an IT person by trade. I do enjoy electronics, but I'm not an early adopter of new technology or follow every trend and latest releases. Every few years, I upgrade my own computer to keep up with newer items and faster response times. After eight years of using my 27" iMac, I finally updated my system.

The all-in-one system of the iMac is nice, but the latest version is only 24" and may make it hard for me to use while laying flat. Therefore, my friend John and I looked at several options in various

configurations. I ended up getting a Mac Mini, which is all the computer hardware in a small box, a separate monitor, and supporting hard drives. John came from Minnesota for a few days last week to help me transfer my information and get everything running.

He arrived late Monday night and we started Tuesday morning. My computer hangs from the ceiling in a custom shelf my dad constructed. That means everything must fit in the space allotted as well. We first moved my all-in-one system to a nearby desk and started unboxing and placing all the parts. It was fun seeing new hardware, but the number of wires quickly became a spaghetti mess.

After nine attempts of various data transfer methods, everything had been moved by 10:00 that night, about 12 hours after starting. Considering the first of three sections to transfer was estimated to take 15 hours, I thought it went well.

On Wednesday, we tested my various programs and made sure everything worked well. Unfortunately, one of my backup storage drives decided to stop functioning and the new webcam is so pixelated that it's worthless. Since I do a lot of virtual meetings and video creation with that camera, a different monitor and camera will be replacing them. That is one advantage to a modular system, separate components are easier to upgrade and swap.

It was fun getting to be around John again. The project we set out to do was accomplished and the remaining changes are easy to setup. It only involves a couple wires to plug and unplug that I can instruct how to do.

I generally like the new system as well, but miss having a more compact setup with fewer wires. The voice dictation is also much better and I see future Quad Life entries being made with little keyboard use. This week will be back to regular meetings and life in general, but it's always good to spend time with friends and work toward a goal.

Another Leader has Passed On

Every January, people speculate what they will do that year or what may happen in the world. The primary predictions for 2025 centered around political change. I'm quite certain nobody would have guessed the major adjustments in conservative Christianity that would come.

In July, Dr. John MacArthur passed away at age 86. He had been a pastor for 56 years in one southern California church. His Bible knowledge and clear preaching was loved by many and God used him to do much for Christianity. Dr. MacArthur's loss was hard for many, including me, but not completely unexpected. His health had been failing for over a year and he had rarely been able to preach. 

Just a few weeks ago, Charlie Kirk was martyred in Utah on a college campus. In the 17 days since, the world (not hyperbole) has been reacting by turning to God and becoming more bold in outreach by proclaiming biblical truth. One of the leading Pastors who boldly preached for decades was Voddie Baucham. Mr. Baucham passed away unexpectedly this week at age 56.

I enjoyed listening to Voddie's messages that accurately declared Scripture and didn't give in to societal trends. As an African American, he taught that nobody deserves something because of the shade of their skin. Voddie's book Fault Lines outlined the problems with social justice and warned of future problems if nothing changed. I learned from it and still have it on my book shelf today.

With so many leaders leading this world, more people are wondering who will replace them. As I heard one person reflect on this, he quoted from Isaiah 6:8 "Here am I, send me." Younger pastors and leaders need to step up and be bold for Christ, and I believe we're starting to see that change.

Living the quad life has challenges for getting out more, but I've found myself considering how I could be more active. One idea was to make more Christian videos on social media and see where God continues to lead me. 

We never know what a week, or even a day, may bring. Whatever you do this week, make sure to serve God wherever He calls and be prepared to be called to account at any time.