Working to Breathe after Traveling

Living through four decades of the quad life, I have learned a few things about lung health. One, I cannot continually go between warm and cold environments as my body can't take the rapid change. Second, I need to make sure I move regularly and not stay flat in bed for long periods. Both these lessons were learned by doing them and then ending up in the hospital with pneumonia. Unfortunately, I did both of these scenarios and added a third irritant just for good measure.

Sitting in a cabin to chat

During my trip, we brought one of my regular night nurses. This was my first time traveling with Steve and my parents and I wanted him to be able to enjoy the excursion as well. Therefore, after my parents took over at 7:00, we stayed in the hotel for a few hours so he could sleep. We did this three mornings in a row, which meant I was in the hotel bed for 11-16 hours straight. I turned on my sides at night, but the beds aren't easy to move me on and tried to decrease work as much as possible.

The weather in Indiana and Kentucky was wet, but nice temperature. We got caught in a couple down pours, but made it through. Just like in previous years, the buildings at camp were very well air-conditioned and visiting cabins was rapid adjustment. Our hotel rooms were frequently quite cold for my preference, with the air-conditioning nearly constantly running. Two scenarios are down, but one more came.

Wednesday and Thursday nights were in one hotel in Kentucky. Steve and I noted our first night that the AC sounded funny, but it worked. Thursday evening, I was in bed while my parents and I hung out until Steve had a nap. Even though it was on the opposite end of the room, it felt like the frozen air was pointed directly up my nose. After a while, my lungs started to feel sore with every breath. I asked dad to turn off the AC for a while and pull up the sheet, but it was too late. It wasn't long before I needed suctioned as well. Clearing out my lungs isn't unusual, but I normally need it 2-3 times a week. By the time morning came, I had already been suctioned seven times.

Ready to head home

I had Steve turn me to my sides to keep junk draining from my lungs, but it only helped to delay the procedure. Friday morning, we left as early as possible and let Steve sleep in the van. I suctioned once before leaving our accommodation and didn't like the looks of what came out. For the ten-hour drive home, we had to stop and clear my lungs twice, but thankfully not like over night. Steve also wasn't feeling the best, so we both suspected the hotel's AC had mold or something. I had hoped getting home would clear up my breathing, but it didn't.

The routine of suctioning 6-10 times per day, and constantly turning me to help my lungs, continued over the weekend. A trip to the local ER on Saturday didn't produce answers, but an antibiotic was ordered just in case.

Monday morning, I called my supply company to order more sterile gloves and suction catheters. The 60+ tubes I had before leaving would normally cover more than a month, but they were dwindling rapidly and would soon run out. Late Tuesday afternoon, a box arrived from the company, but it didn't contain what I ordered. It wouldn't be until Friday when I finally got my order, but not all of it.

Thankfully, suctioning has decreased to 4-5 times a day, with occasional long stretches between. My lungs are sore, and I'm tired, but a second medication has started and will hopefully help. I likely won't ever know for certain what exactly set off this round of illness, but I need to pay better attention to lung health. It's unlikely I will be traveling again, but I'm thankful for the time away and the experiences enjoyed.

Vacation Illness

After a six-year break, I took a week-long trip from June 16-20. It started out as a fun time, but ended in a way that we hadn't planned.

For most of my life, vacation has primarily consisted of going to CHAMP Camp. I had seven years as a camper and then volunteered for 16 years as a counselor. I still maintain their website and promote camp whenever possible, but I can no longer endure the physical needs to be a counselor. This year was CHAMP Camp's 35th anniversary and alumni campers and counselors were invited to come on June 17.

Dad wasn't certain the van could handle the trip, but my parents, night caregiver, and I were eventually on familiar roads to Martinsville, IN. The night before we left, I noticed a green creep across my face any time I considered out destination. After allowing my caregiver to sleep a few hours, we drove 15 minutes from the hotel to join everyone for lunch.

I wasn't sure how many people would still be around that I knew, but it felt like returning home. Most of the campers were new, but familiar faces were everywhere. It soon became routine to hear "Joel!" followed by a hug and story telling. It felt very good to generally be welcomed and missed by so many. Mom concluded by the end of Tuesday that I had received more hugs in one day than I had in years. It's a shame more places aren't as excited to have you come.

We stayed as long as we could Tuesday evening before returning to the hotel. About mid-morning Wednesday, the four of us drove further east to the Creation Museum in Petersburg, KY. My first visit to the museum was during Father's Day in 2015. I was excited to see what had changed in ten years, as well as what remained the same. An entirely new entrance had been made that was a fair distance from the main building. It was fine on a clear day like we had, but it would have been a long stroll through rain or snow if weather was different.

Watching weekly updates from the museum, I knew what exhibit changes has been made. I was thankful to see a large section on the sanctity of human life and how a baby develops in the womb. As society continues to advocate for the murder of the unborn, more such displays are needed. The other changes were also fun to see, but the core message stayed the same. Unfortunately, I didn't research enough and we missed the new butterfly house by 15 minutes. However, the multitude of plants in the new greenhouses were fun.

Our final day with activity was Thursday, June 19. Our hotel in Kentucky was between the Creation Museum and Ark Encounter and made for a short morning commute. My first visit to the Ark was in 2018 and I knew a lot had changed. Just like the Museum, a new welcome area greeted us before entering the main attractions. Several buildings have also been added to include a virtual reality tour of the flood and other displays. The displays in the Ark itself were mainly the same, as I assumed they would be, but I almost felt like I missed some of the information I had seen the first time. However, we did get to tour the zoo this time and see the much anticipated zorse and zonkey. Before leaving, our group watched a live show in the new auditorium. Seeing it in person for the first time, I had dreams of serving God by getting to be a speaker and teaching from the stage.

In order for my night caregiver to get rest, we left the hotel late in the morning and returned a little earlier than we would otherwise. However, I think we saw mostly everything and missed out on just a few shows. Thursday night, laying in the hotel room, my lungs started to feel sore and congested. It turned into a souvenir I didn't purchase, but definitely won't forget. That will be on the next entry as it has been a story of its own. 

Final School

It has been a busy week of finishing and preparation. Tuesday was my last class for the year. It was a group of nine Occupational Therapy Assistant students who seemed to listen well. One in particular was very quiet and attentive (see picture).

OT students are very interested in all the different items I use to function. I discuss my wheelchair and different options as well as how I use mouth sticks and what type works for different needs. In class, they don't get a lot of real-life experience, especially with all the equipment I use. My schedule one-hour presentation frequently turns into 90 minutes or more. I wonder how much they actually remember after I leave, but hopefully my presentation helps.

Thursday morning, I visited with my ENT about my trach button and nose. It looks like I may have infection again, so I'll see what results come from testing. For my nose, I hoped to get help for breathing at night. Unfortunately, nose cartilage keeps growing throughout your life and mine is growing crooked. Therefore, when it gets annoying enough, I'll need to have it surgically corrected. It wasn't the answer I wanted, but it was an answer.

Today, Father's Day, is the last day to relax. After six years of staying home, I'm finally planning to take an over night trip. I've been thankful for all dad's help in packing, checking the van, and making sure everything is ready for a road trip.

Dad continues to do so much for me in many ways and rarely gets to take a day off. He should be at least somewhat retired, but continues to work at least full-time to keep insurance. I look forward to when he can slow down and not have work responsibilities.

I will continue to see what the quad life brings and be thankful for who God has put around me.

Knowing Your Area

In every hobby or field of work, you gain experience as time passes. Different scenarios help to gain knowledge so that when it happens again, you can quickly solve the issue. The same is true when studying Scripture and using it as your basis for thinking.

If I am talking to someone on the street, I have verses I can reference for different objections. In Matthew 5:22, Jesus expounded on the sixth commandment that hatred is the same as murder. A few verses later, in 5:27, He said that looking with lust is the same as adultery. Further references are Ephesians 2:8-9, Romans 6:23, and a handful of other verses. When preaching, I tend to study one text and use other passages to support the message. However, I have been noticing lately I may be getting narrow sighted and need to pay further attention.

For the last few weeks, I have been reading a book on general advice for Biblical counseling. I took an online course early in the year and this has been a very loose follow-up. As the authors look at different counseling scenarios, they point to various passages that help relate to a situation and may assist the counselee to a better frame of mind. While some of the advised texts are familiar, the majority are ones that I would need to look up and further learn their context.

I have written on this blog several times about my routine of reading the Bible. For several years, I read through from Genesis-Revelation twice a year. Now, I'm down to about once a year of cover to cover, but replaced one of my reading times with more in-depth study. This is slower, but I still progress through Scripture and invest in God's Word.

At this point in the quad life, I do not see starting a new career as a Biblical counselor. However, as a part-time preacher and occasional mentor, I do see it as useful knowledge to be familiar with. If nothing else, this latest book has taught me not to get blinded to one train of thought while studying. Continuing to broaden my knowledge and quick reference tools will always be helpful, no matter how often or little they get used.

Sitting Satisfactorily Soon

Just two weeks ago, I had my evaluation for a new wheelchair. This week, I made further progress toward getting a new system. This is much faster progression than I expected and it's a welcome change.

Early Friday morning, dad, my caregiver Sara, and I loaded into the van. First off, the rubber pad on my chin control popped off, making it so I couldn't move to get positioned. In the process of retrieving it, my control/display box was leaned on and broke the mount. Therefore, going to look at my chair's replacement caused my current chair to fall apart.

After getting my parts back together, we got to the Des Moines suburb thanks to Google's directions. The first order of business was to fix the seat I was sitting in. Searching through their parts inventory, the chair tech I met at my first evaluation found a duplicate part to support my box. Thirty minutes after arrival, using tools he had available in the van and provided pieces, dad had it fixed. Next up was what I actually came for, getting fit for a new back rest.

I was situated in a chair that had a foam pad on the back. The technician pushed and pulled until I was sitting straighter than I have in years. After he was satisfied, air was sucked out from the foam-like substance to keep it in place. He then took pictures of it and less than an hour later, a new back support was produced. The last time I had my back adjusted, it took several months and no longer fit when I got it. I didn't get the back rest fitted to my current chair, but look forward to using it.

Finally, I was shown demonstration models of the chair that was suggested. I have hardly heard about Quantum chairs, but liked what I saw. The frame is slightly narrower than my current system and the sit has more functions. I can go up to 10% of a standing position and raise the entire seat a full foot. Therefore, when speaking to someone tall or preaching from the floor (no stage access), I can elevate myself. In these situations, I can be seen more easily and hopefully preach more effectively.

If insurance approves everything, I may have a new chair in three months. Considering it took me eight years to get my current chair, this is a great start. Living the quad life has perks in seeing new technology. I am thankful for what God has provided and look forward to what may come.