Snowy Weekend

The warm days we had earlier this month are gone and winter has arrived. Thanksgiving day was cool, but pretty good for late in November.

It was a rare occasion in that I actually went to someone else's house. My aunt and uncle invited us over for Thanksgiving, so we headed west after church. Their house does not have a level entrance, but a couple wooden boards and a metal plate allowed me in the front door. Since my steering isn't very smooth on my new chair, I opted to use my older seat with better control. I'm never real comfortable in someone else's home, I am afraid I'll hit something or not fit their tables. Thankfully, everything went well and we had our Thanksgiving meal with family.

Late Friday evening, snow started falling and went through most of the day Saturday. My Thursday night nurse was talking about coming early Friday to avoid the weather, but she ended up not coming either Friday or Saturday.

I have heard this winter is supposed to be cold and snowy. With more snow predicted tomorrow, it's starting to look like the predictions may be true. We never want my caregivers to put themself in danger by driving on bad roads, so we understand when they can't come. Even though we somewhat expect it when the weather turns bad, it still is a challenge to cover.

Since last week's entry, I have spent more time in my new wheels. I'm somewhat getting used to the differences, but we uncovered a potentially dangerous scenario I need to be careful to avoid.

When I travel, I normally tilt my chair back about as far as I can. Even for short trips, it's a good opportunity to shift my weight and seems safer if we got into an accident. With my new seating system, the entire seat raises up a few inches as I tilt, making my head close to the ceiling.

On my first trip outside the house, I did the same routine I always do. However, as the vehicle turned corners, my chair seemed to move and not feel very stable. Right-hand turns felt especially uncomfortable and I wondered about the seat's connections. On our final right turn, I asked mom to watch my wheels to confirm my suspensions. She said the right wheels came off the van floor about two inches. Therefore, it gets top heavy easily and has good potential to fall over. For my subsequent excursions, I hardly tilted and didn't notice any further trouble. I'm not sure if the problem can be fixed, which isn't ideal for trips more than a few minutes. 

Such are the challenges of the Quad Life. This was not an issue I thought about before this week, but one that is now at the top of my mind. This week looks cold and I plan to stay home, so that will allow more learning time at least. 

Giving Thanks for Progress

Once again, we have reached late November and will soon celebrate the official day to give thanks. Personally, I find the easiest thing to do in prayer is give God thanks for all He has provided. Without Him, we would have nothing, not even the air we breathe, heart beat, or life.

This year, I was thankful to be able to take a trip east to see friends at CHAMP Camp and visit the Creation Museum and Ark Encounter again. The mold in the hotel air conditioner wasn't fun, but it was a reminder to give thanks for times of good health and easy breathing.

A big item of progress happened Friday. I ordered my new wheelchair in May and first sat in it in late October. The chair company completed all the adjustments and brought it to my home. The first order of business was to do a pressure map of the new seat cushion.

Map from 2019 showing issues

Pressure mapping involves sitting on a thin pad full of sensors. It is then displayed on a computer or tablet and shows pressure areas. Light to medium blue is ideal with yellows and reds indicating problem areas, somewhat similar to a weather radar. It normally takes doctor's orders, scheduling an appointment, and traveling somewhere to get it done. This time, it was part of the chair setup and done right in my bedroom. If I had thought about it, I should have tested my bed mattress, but I didn't until well after the technician left. I was thankful it could be done and the new seat tested very well without any changes required.

Some button changes had been made since I last saw the chair, but they were soon adjusted and I had my first opportunity to drive. As I expected, the tiny joystick is much more sensitive than I'm used to and has very little range of movement. Therefore, the slightest change translates into a larger or jerkier movement than desired. As I navigated through my room and down the halls, I kept it in a low speed setting and managed not to hit anything, or anyone. Learning the different seat functions will also take time, but I'm thankful for the technology God has given us to accommodate fallen bodies in this world.

Friday was also fully covered by caregivers and allowed my parents to get away for a full day. Shortly after getting home, dad discovered my new chair is three inches longer than the one I've been using. This could make for a tight, if not impossible, fit for the tie downs in my van. Thankfully, alternate restraining systems do exist, but it would have to be researched and installed. As of this writing, I have yet to test getting in the van.

While more challenges come, the areas of thankfulness can outweigh them. I'm thankful for all the years I have been given and experience God's blessings. May you have a Happy Thanksgiving and see what God has done. 

Fall Illness has Begun

I am very blessed in that I rarely get sick. As temps get colder, illness usually increases and we head into cold and flu season. This week, I felt fine as I usually do. However, I can't say the same for my caregivers.

Last week Sunday, mom received a message from my night nurse that he was sick and would not be able to come. We hoped my other night nurse could cover, but we never heard from my agency. Therefore, it was another long night with short sleep for everyone. Monday night was covered, but Tuesday and Wednesday nights also went without help.

In addition to nights, days also had trouble with missing help. My caregiver for Thursday and Friday was also ill and unable to come. Therefore, Sunday through Friday had five shifts open out of a total of nine. Thankfully, my night nurse who was on extended medical leave is back and doing well.

Since we didn't have help Wednesday night, that meant mom and I would have slept in Thursday morning. However, dad was also very busy at work and had something that needed to get finished. Therefore, I got up a little earlier than usual, did a hurried morning routine, and I went to work with him. In our rush to get out the door, we even skipped my usual protein shake for breakfast. By the time we got to lunch, I was getting hungry.

I've been with dad at work a few times. As a commercial printing facility, it's interesting watching folded papers get stacked, stapled, and trimmed to form an information booklet. I try to watch, but stay out of the way as well. For several minutes, I parked by the one nearby window and let the sun warm my face. It felt good, but I was also next to a machine's noisy blower. I battled for a while, good feeling sun vs. noise, but eventually my ringing ears won and I relocated.

Friday and Saturday were very nice days for mid-November in Iowa. Mostly sunny with highs near, and above, 70 was a treat. The two days were spent juggling witch parent stayed with me while the three of us tried to complete our various tasks. Unfortunately, the yard work dad did Friday was hardly noticeable Saturday as leaves kept dropping from trees.

These weeks are the more challenging times in the quad life. We all missed items we had hoped to do, but also made accomplishments. My trach button still feels very plugged at the end as well. The schedule meant my medicine was applied at odd times, but I doubt that would make much difference. I'm looking forward to this new week and hope it will be back to a more regular schedule.

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.