Mounting Pressure or Something Else?

After preaching last week Sunday, I looked forward to a week at home where I could get caught up on work and prepare to preach again today. Monday, I did my regular routine of checking my skin for any problems. Both times, my front side looked fine as far as I could see. I don't often mess with flipping to my side and setup mirrors to see my posterior and often rely on my caregiver's eyes.

Tuesday morning, Sara my caregiver was doing my morning leg stretches and saw a bandage that normally doesn't exist. Further investigating discovered a new open area under my upper right leg that my night nurse must have seen.

It wasn't long ago that I saw my dermatologist about the sore on my left leg that I have had for years. He was elated at how good it looked and to keep up the good work. Since I saw him in late April, I haven't changed any of my routine and did not expect a new area to open.

Therefore, I made sure to bike all three times I could this week. Sara noticed my chair's seat cushion was a little spongy, so she pumped more air into it. I also slightly decreased my evening upright time in favor of laying flat more. Sara said it was looking better on Friday than it did Tuesday, but still existed.

With 41 years of living the quad life, this type of development isn't new. Even with that, it's still frustrating when it happens.

Logging in to write this week's entry, I was reminded of the treatment I had on the same leg just a little over a week ago. I haven't had trouble with treatment before, but the last time was three years ago. It's possible the combination of a few factors caused the issue, but I won't know.

Other than today's preaching, I only have one outing scheduled this week. I'll wait and see if I have to drastically limit activities or if the current changes help make progress.

Even with decreasing my time upright, I was thankful to be able to either complete or make progress on a few web projects. One morning, just before leaving my room to bike, I got a call from one of my clients that they were having email trouble. Of course I prefer everything to stay working, but the occasional need for help is somewhat fun. I get to research and find solutions then see if it fixes the problem. This time, one minor setting change fixed everything and they were back to normal operations again.

In some respects, when things are going well, we may forget to look to God and give thanks for all we have. When a problem, like a new sore, arises, then we call on God more quickly and seek His help in everything. You never know what a week may bring, but I can be certain that nothing is out of God's control. 

Down Days

Iowa weather continues to be a roller coaster of variety. A week ago today, it was warm and pleasant weather. However, after more rain, the temps dropped again for the rest of the week. Tuesday through Friday had highs only in the mid to low 60's and lows in the 40's.

On Thursday, I had my monthly hair cut at a place I've been going for years. I ran a few errands, then arrived more than 15 minutes early to my appointment, which is highly unusual. My barber was with another client, so my caregiver and I waited up front.

Just above where I was sitting, a ceiling fan was running on a low speed. Even though I was wearing jeans and a long-sleeve shirt, the cold breeze got to me. I had my caregiver grab my coat, but it didn't help much. By the time my barber was ready, I felt like an ice cube and was absolutely miserable.

Thankfully, I left about 45 minutes after arriving and welcomed the slightly warmer outside air. Even the cloudy day with a temp around 60° felt warmer than inside. Unfortunately, the time under the fan had taken it's toll and even after extended time under blankets at home, my temp didn't even rebound up to 97°. 

Before the outing, I hadn't been feeling the greatest. However, it's getting more difficult to schedule hair appointments and I didn't want to cancel at the last minute. 

Friday was also spent warming and just not feeling great. Saturday was a little better, but still very tired and not feeling right. At church this morning, our pastor had a great message, at least what I heard. I had several times I found myself with eyes closed and head down when few others did! If I arrive early again and can only be under a fan, I think my caregiver and I will pop outside and wait by a nearby bench.

This weekend is also the time to reflect on the ultimate price some have paid to keep America's freedoms. As the country celebrates its 250th year, we cannot forget that freedom is never free. In some areas of the world, a simple thing like getting your hair cut isn't allowed. Quadriplegics, and other person's with disabilities, are often secluded from society in government run health facilities. They are given the absolute basic of care to maybe survive a few years, if even that long.

Thank you to families who remember their loved one who never came home. I greatly appreciate your sacrifices and will not forget them this week, or any other. 

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.

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. 

Open Nights and Hot Day

I've wondered what a "normal" life and week would be. Get out of bed under your own power, no need for caregivers, go to work, come home, etc. However, that is not the quad life or what God has given me. This week was a mixed bag of various items.

Tuesday and Wednesday night did not have help. Two various nights a week without help will now be the normal for the foreseeable future. This week meant a very tired start to Thursday and a dentist appointment.

A few weeks ago, it was discovered that I needed a new filling in one tooth. This in itself wasn't a big deal, but my dentist is located in a former house and has limited space I can access. After getting setup in my normal space and letting novacaine take affect, it was discovered some of the equipment wasn't working. Therefore, with a half numb chin, I had to drive to a different room and get setup again. Thankfully, everything went as expected in the second location.

About three hours later, with a partially numb mouth, I had my annual certification to determine if I still need the same nursing care. My care needs have adjusted little in 40 years, but they still need to be checked annually. After assuring I can hear well, but still need complete help for pretty much everything, the assessment was finished. Just like last year, I don't contribute to household cleaning either. Now we wait to see if Iowa thinks I can stay home, which is cheaper for the state, or to lose a good chunk of funding and go to a facility, which ends up costing the state more.

Finally, Friday morning, I got up early and headed out to my first visit of the 2025 Iowa State Fair. My time at the gospel outreach booth went well, but I only had short conversations with visitors and handed out a few gospel tracts. When my caregiver and I left the air-conditioned building, we were abruptly reminded that the afternoon was in a heat warning.

Lunch started off with sharing a new fair food, a scotcheroo shake. The cold tasted good and we quickly emptied the container before remembering to take a picture. Unfortunately, after eating chicken strips, my stomach discomfort I had in the morning returned. We spent about 30 minutes minimally roaming around, but I was ready to get home.

Despite dad's best efforts, the van does not cool off on hot days. By the time I was home, my temp was nearly 102.5° and I was glad to be home. Thankfully, cooling off isn't too hard for me. After 90 minutes without clothes, getting washed down, and having my cooling fan on me, I was back down to a reasonable 98.8°.

My next scheduled day at the fair has possible thunderstorms, but should be much cooler. After preaching tonight, and next week, my calendar is starting to have open days again. I'm thankful for all that God allows me to do and His care through so many people. I don't know what the future may bring, but I'm hoping for a calmer week ahead. 

Importance of Preparation

Another week has come and gone and it's Sunday afternoon once again. Thankfully, my breathing has continually improved. I was able to go from late Tuesday until Friday afternoon without needing my lungs cleared, which is near my regular routine. However, it was also a week of reminders to prepare.

Over the July 4 weekend, flooding in Texas was in the news. Several people were killed in flash flooding, including many children, when a storm produced much more rain than expected. The Quadalupe River quickly flooded its banks and ripped through homes, camp sites, and a girls' summer camp.

When Jesus was confronted with tragedy in His time (Luke 13), He answered "Repent, or you likewise will perish." Times like this call Christians to offer comfort, but also a reminder that we always need to be ready to leave this life and enter eternity. On Friday, I was also reminded to check supplies carefully.

For the past several months, I've had trouble with my trach button. My ENT and I decided to change it after a few weeks of treatment around it. That requirement was fulfilled, so Friday was another trip to Des Moines to see the doctor. Before leaving, I made sure to ask my caregiver if we had a new button. She confirmed she had checked just prior to leaving Thursday and all was good.

Unfortunately, when we got to the doctor's office and went to unpack everything he needed, the button wasn't found. My doctor was understanding and didn't charge for the visit, but now I need to return in two weeks. Upon returning home, the missing hardware was found and put in my travel bag. We don't know what happened, but learned a lesson in checking more than once.

Living the quad life is quite the journey sometimes. I'm thankful to have improving health and look forward to a very busy few weeks ahead and getting used as God allows. 

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 Michael 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. Michael 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 Michael 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 Michael 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 Michael 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. Michael 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.

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.

First Week with Starting Trouble

Most weeks come and go with little change and everything blending together. This week went relatively well, but ended with some excitement.

Tuesday, I had an appointment with my pulmonologist in Des Moines. However, I didn't receive my usual email reminders. I called Tuesday morning to confirm my 11:00 appointment and was told I needed to arrive at 10:30. That gave me 75 minutes to get dressed, in my chair, and drive for over an hour. My caregiver and were late, but five-minute appointment went well and my lungs are doing great.

Friday morning, I spoke at a school about 15-minutes away from home. While driving through the Iowa country side, we heard a kind of screech or rubbing sound. Upon arrival, I called dad and let him know the issue. I helped with the school's morning worship and enjoyed being around kids again. Kindergartners reviewed their memory verse along with different grades doing various activities.

My presentation was on God's name and giving Him proper fear and glory. The K-6th students seemed to understand and listen, but they may have been concentrating more on my wheels and footwear by their eye direction.

Returning to the van, I found a note from dad that we should be okay to go home. That was good to hear, but then my wheelchair lift didn't work. My caregiver, Sara, tried the indoor emergency controls and got it to work. A friend followed us home just in case, but we got back in the garage without trouble, other than noise. Sara had to again use emergency controls to get the lift to work, but I was finally home and out of the vehicle.

Friday evening and Saturday morning, dad spent time diagnosing problems and researching solutions. Parts look hard to find for my 30+ year-old van, but he did a temporary cleaning solution that solved the noise. A little wiggling of a sensor also fixed the lift, so my transportation is hopefully good again.

I'm thankful for the parents God has given me in this quad life and everything He has enabled them to do. As I write this on Saturday afternoon, is now having muscle pain in his leg. Since he does most of my physical care on weekends, it makes everything harder. Such is the quad life, but I continue to pray for ease for my parents. Hopefully this coming week will go more smoothly.

Busy Quad Week

Most weeks, excluding my medical routines, I feel I do regular activities to other men. I work on whatever is needed for my job, study Scripture, and play some games for relaxation. This week though, has been mainly quad life activities.

The first four nights, Sunday through Wednesday, did not have a night nurse scheduled. Mom and I did the regular routine of staying up until 1:30 when dad took over. He finishes my cares around 2:00 and I

can sleep until around 7:45, if my body lets me. One or two nights is okay, but four gets hard. I had a couple afternoons I tried taking a nap for 30-45 minutes. If someone came into my room, they would maybe see a foot sticking out, but I am otherwise cocooned under pillows and sheets.

Monday, Brenda worked her regular shift and then another four hours Tuesday night so my parents could rest more. Unfortunately, that was her last regular shift with me. Brenda has finished her schooling in Iowa and now returned to her home in Arizona. When she started at age 19 in early 2022, I wasn't sure what we were getting into. However, she has been a blessing from God that my family has greatly benefited from. I'm thankful for the unique skills I was able to teach her and hope they will be useful in Brenda's future career. Now, I pray my remaining daytime caregivers will be able to cover all five days a week again.

Last Thursday, December 5, I made my regular monthly medication order. I had received a letter from insurance that rules had changed for one, but it sounded like it only needed an updated prescription. As with most things insurance related, that wasn't the case. Every day this week I had to call or email either my pharmacy, doctor's office, or insurance. First one thing was needed, then another, and at least once it looked like I could no longer get it. This Friday, I had a note from my doctor that insurance approved the medication and the pharmacy delivered it that day. Technically, I ran out of my month supply that day, but I've learned to accumulate a few extra with strategic order times.

I'm looking forward to a regular week coming up as we prepare for Christmas. I have also had trouble with a very stuffy nose and sore trach button the last few days, but I pray it clears up. Have a great final week before Christmas!

Mattress Matters

I spend most of my time in bed. It is where I can change positions easily and my computer is most accessible. Doing my medical cares are also easiest when laying down, so it's where I spend my time. Therefore, I use my air mattress a lot and depend on it being stable.

Unfortunately, the mattress I was using was around 10 years old and was sinking in whenever I sat. In January, I started working on a replacement. Not all air mattresses are made to be able to sit, and finding a provider turned out to be quite a challenge. In June, I was introduced to another equipment supplier that had mattress options I could use.

The next few months were spent on paperwork and several weeks of silence. The person I started working with left the company and nobody contacted me to follow-up. Finally, early this month, I received my new mattress and dad got it setup on my bed. After 11 months' of work, I was glad to be finished and looked forward to no leaks and sinking. However, the joy didn't last very long.

It has now been three weeks since I started using the new system and most of my caregivers, and I, don't like it. No matter what position I'm in, I sink in and am hard to reposition. When I sit, the mattress has a special "sit mode" that we are all having trouble remembering to turn on and off.

When dad investigated my old mattress, he found a hose with a hole when I was sitting. He swapped it around with another one and likely fixed the issue, within an hour. 

So far, I haven't heard of switching back to my old mattress. It's frustrating that the new one wasn't a better solution, but I guess I learned what not to get. Such is the quad life, but I'm thankful to have options to try and at least have a good backup if, or when, it's needed.

Crashing Oxygen, Third ER Trip

Monday morning, September 30, my nursing student caregiver, Brenda, started my regular morning routine. She had last worked on Wednesday and I wanted to get her caught up on everything. However, my voice had gone from regular sound and volume the night before to a soft squeak. Even with getting some sleep, I was very tired. I asked Brenda to take my blood pressure, and it was 88/54, only slightly below my normal. Taking it an hour later found it to be 78/45.

After her regular class, Brenda returned around 11:00 and I asked to get undressed and turned on my side to try to rest. As soon as I was turned, I felt very strange and not well. We stopped mom as she was leaving for work, Brenda could no longer find my blood pressure and my oxygen was reading in the low 70's. Mom called 911 and the familiar EMT's from the previous week were soon in my room. Before transferring off my bed, they put me on a large amount of oxygen to help stabilize my numbers. With Brenda at my side, I now took my third trip to the local ER in less than a week.

More tests were started, including a CT scan of my upper body. Despite being cleared from having pneumonia the previous evening, this was now my diagnosis by 3:30 in the afternoon. I would now be admitted again for an unknown time period. The air mattress and supplies dad had removed from the hospital the day before needed to return again.

Later that evening, in my new hospital room, mom and I went over my cares with the nurse, including bathroom needs. My routine was apparently unheard of, and likely not necessary, according to the 30-year veteran nurse. Once again, my parents were responsible for my care and stayed with me over night. At least a tube in my nose for oxygen was easier to manage than an NG tube.

Wednesday morning, I was down to 0.5 liters of oxygen in order to maintain an O2 saturation of at least 90%. Brenda came to stay with me and give my parents a much needed break. The hospital took my oxygen tube off to see if I could well enough to go home. Eating lunch very slowly, Brenda monitored my stats and when I needed to stop and rest. With numbers barely within range, I was released to return home Wednesday afternoon. Getting in my chair, it felt like I could pass out, but only Brenda and I shared this information so I could get home.

These three updates were written on Saturday and Sunday, October 5-6. Since returning home, I have been very tired and have taken several naps. I'm also having other quad life issues that I hope resolve soon. My friend John monitored my email, but I'm still behind on clients' updates and getting out monthly invoices.

Through this experience, it is an apparent reminder to never take time for granted or depend on each day going well. Sitting in a dark hospital room at night, five minutes seem to take an eternity. Looking forward to getting my mouth swabbed so I could get a few drops of water was a major highlight. I also know God has provided everything I need, long before I'm aware.

I pray it will be several years again, if ever, that I have to go to the hospital via ER. Whatever comes, I will trust in God's plan.

Shaking Body, Second ER Trip

As we were leaving the hospital at 12:00, my head spasms increased to include my upper body. It was now a rhythmic tumult where my head would leave my head rest, go forward, then return. I could try to counteract the undulation, but the movement made driving a challenge.

Mom noticed the spasms as well after I pointed out I wasn't doing it on purpose. It was a concern, but we didn't think it was too serious. Over the next few hours, the spasms continued to get worse. Within my four-second breath cycle, I would be pushed off the bed, fall back, and repeat. After multiple nights without sleep, I was also exhausted and wanted to sleep. Mom called a nurse friend who suggested muscle relaxers and it could be due to missing meds for two days.

While dad went to get Benedryl, I took two of mom's Tylenol arthritis as the directions indicated. Thirty minutes later, I also took two of the Benedryl as directions recommended. Swallowing was a major challenge as I had to time my breaths and head movement just right. Concentrating, I managed to get most of the medication, but also choked on some of them. Attempting to lay on my side to rest, no position worked. My upper body continued to thrash back and forth with no relief and increasing strength. I felt bad asking my parents to move me every few minutes, but I didn't know what else to do.

By 5:30, the spasms had increased to the point I barely had any control of my head. With my upper body nearly out of control, it seemed like my diaphragm would be next. I told dad I likely didn't have long to be breathing and needed to get back to the ER. In the blink of an eye, he had me dressed and ready for my chair. To get up, dad unhooked my diaphragm pacemaker as usual. This time, the wire on my side came out of place and it took longer to reconnect my breathing aid than normal. As I sat unable to do my self-breathing, my head started to buzz, but I didn't feel any panic. I had been praying for relief from the spasms and felt like my time with earthly concerns would soon be over. A welcome gulp of air resumed our frenzied trip for help.

Somehow, I managed to drive out to the garage and get loaded in the van. Dad and I left for the ER while mom planned to follow us soon. For the six-block commute to the hospital, I felt the outside air breeze through the van's window and a great calm came over me. We arrived at the ER faster than any ambulance would have transported me and I drove inside after dad got me unloaded. Sitting near the check-in desk giving my information, I suddenly noticed the spasms were completely gone and I once again had normal body control.

Over the next three hours, nearly every test possible was conducted. I was x-rayed for pneumonia, had bladder tests, blood tests, and I recalled what had just been a scary few hours. Everything came back fine, and the only conclusion was a possible overdose of medication. Laying in the ER, I felt better than I had in days and was ready to go home.

Driving back, I noticed water on the van's windshield and concluded it had rained while we were inside. In the garage, the same liquid seemed to float off the glass in some sort of evaporation. Laying in my own bed again, I looked at the beam over me for my lift and noticed it also looked wet and had hundreds of bugs crawling around it. I knew this couldn't be the case, but it was still what I saw. My night nurse noted that one of my meds, Tizanidine, had a side effect of hallucinations, especially when going from completely off it to restarting.

The night included seeing items that didn't exist and low oxygen saturation. I didn't know it would be my only night at home before another scary morning.

Plans Change, First Trip to ER

In Proverbs, Solomon points out that plans for the next day may be different than expected and not to boast about tomorrow. Since my last entry two weeks ago, I have had two hospital stays and three ER visits. They weren't fun, but will be the topic for three entries. I want the experiences documented for both myself and anyone they may help.

Late in the evening, on Wednesday, September 25, my stomach wasn't feeling good and I hardly had any supper. Thankfully, everything seemed to be working correctly and didn't seem like a bowel obstruction as I've had before. The night started out well, but just kept getting worse with stomach discomfort and increasingly difficulty breathing. Around 4:00 AM, my nurse and I decided to push through the night and get to morning. By 7:00, a final effort to try to clear my gut didn't achieve the desired outcome and we decided it was time for the hospital.

Any time I sat, I couldn't breathe, and therefore thought ambulance would be best. Despite mom's request, the EMS refused to take me to Des Moines and would only transport to our local hospital. My parents and I knew they weren't equipped to handle my needs, but we didn't have a choice. After a quick transport from home, I was in the ER by 7:45 Thursday morning.

I told the ER doctor my experience and knew I needed to get an NG tube. Personal experience apparently meant nothing and the next several hours were spent waiting and getting tests. Around noon, I finally got the tube I had requested, but not as needed. A total of two nurses took five tries to finally get the tube in my stomach instead of popping out my mouth. Drinking water multiple times to get it to go the correct direction only hindered my predicament. Instead of connecting my new hardware to a suction machine, it was used to force a contrasting liquid to my stomach. However, the second push of fluid resulted in a reverse of contents, and I then had to sit another two hours for a CT scan.

Finally, by 3:30, it was decided I had a bowel obstruction and needed my system emptied. It only took nine hours to do as I requested. Diagnosis also meant a new doctor, one who specializes with the gut. Upon on our initial meeting, he was already familiar with my history and was aware this hospital couldn't accommodate me. Des Moines didn't have any beds available, so I had to stay where I was. Dr. H wrote orders to basically undo any rules about family help. Retrieving my air mattress from home, dad and hospital staff soon had a room ready. For the next three nights, and mostly days, my parents had to stay with me and take care of my needs.

Laying awake at night, I counted breaths, watched the clock tick, and didn't sleep. During night shift, the nurse would come to take my vitals three times. I asked for ice packs for my head, but that was about the only interaction I had with hospital staff. After two days with no medications, food, or drink, the NG tube was removed Saturday and I could have a liquid diet.

Sunday morning, while mom was home resting, dad and I watched our church's morning service. At the same time, the doctor came and said I was released and could return home. I was thankful for the news, but asked about something that had started that morning. My head kept having regular spasms and would force me to look up. Dr. H attributed it to stress and being tired and that it would stop soon. Unfortunately, that wasn't the case and it would result in scary circumstances very soon.

Learning Voice Little by Little

Back in July, I have my annual dentist appointment. Everything looked good, except for my two front teeth which he said were showing signs of wear due to my mouth stick. Ever since then I've been trying to use voice control on my computer. I am far from using it exclusively, but I have learned a few things.

One of the hardest things on my teeth is using the mouse. Therefore, this is where I try to decrease using my stick and use voice instead. Sometimes, it is just an easy task by saying to open a menu or click on a certain button. Other times it can save several clicks by saying to open or close a program. These areas do help, but doing other mouse actions can take a lot more work.

If it is not something that I can specifically say, then I need to go through a grid system saying which numbers or close to what I want selected until the mouse is it the correct object. Frequently, I will take a faster route and just use my stick to click. Dictation is also an item I have used somewhat, such as writing this entry, but accuracy isn't very good. Such as when I said "I have used somewhat," it turned into "I don't know I have your sandwich." It is better if I speak slowly and in short phrases, but that doesn't always do it either.

Programs using memory

I have also noticed that the longer I use the system, the more bogged down my computer seems to get. Doing some investigation, I found that it used a large portion my computer's memory. At one point, it was using as little as 45MB, and after a few days it had gone up to 16GB (1024 megabytes, MB is one gigabyte, GB). I'm not real sure the reason, by shutting down the system and turning it on again fixes the issue. I have started to get in the habit of turning it off when I play some games and then resume it after I'm finished.

For now, it is still a tool I only use occasionally and frequently get frustrated with. Trying to use it for this entry has likely taken longer then if I just typed it. At least it is an option that is available to help living the quad life.

Another Exhausting Week

In late June, my main day nurse had surgery and will not be able to return until the end of the year. I have written about it a few times already, but I have thankfully had regular night nurses. Unfortunately, that was not the case this week.

The scheduler from my nursing agency mailed me in late August to let me know both of my night nurses had requested time off in September. Therefore, I wouldn't have any help September 1-7, a full week. Thankfully, my one caregiver's plans were flexible and he agreed to cover two nights. Labor Day on September 2 was also without day help. In a typical week, I currently have 11 shifts covered. This week ended with only five of the regular filled. Brenda, my college student caregiver, did come for a couple hours two evenings to help with my bedtime cares and allow dad to get to bed earlier.

Multiple days without assistance isn't anything new. I am very fortunate to have as many caregivers as I do and receive so much help. I know another quadriplegic in Iowa who is approved for funding to have 24-hour care at home. That alone is a big hurdle to overcome, but he has very few hours filled with nursing and is primarily just he and his mom. He has told me before that he stays in one place in bed all night while his mom rests and nervously waits until morning, hoping the ventilator and everything stays connected and working.

It is hard to see my parents getting little sleep and getting so tired they get ill. Weeks like this make me consider again about still living at home. Thankfully, this new week should have normal hours covered again and we can be more active.

One positive note came Saturday morning. My evaluation came for my sermon last week and I received 90%. The primary note was that I need to adjust my voice tone more often, something I already know needs improvement. Overall, my final grade for the course was about 89%. After 15 years of not taking formal classes, and a new course of study, it went better than I expected. 

Such is the quad life, I continue to rely on God's provision and give thanks for opportunities He has provided.

Do I Decide when to Wake Up?

Living the quad life means relying on various service providers. It seems that most, if not all, require regular question sessions. For my night nurses, their company supervisor visits every 60 days to go over my medical needs. The same happens with the person that officially supervises my day-time providers, who also comes every other week for monitoring. This past Thursday, I had my annual interview with the Medicaid representative.

No matter the length between sessions, very little tends to change. My medications may adjust slightly, but that's about it. Therefore, it would make sense to primarily copy the previous answers from my last interview. Unfortunately, not much in the medical field goes with common sense and the same questions are asked almost every time.

Thursday, some of the inquiries were about how much I do for household chores. I have yet to figure out how to roll up to a window and have a long enough stick in order to clean it. Vacuuming is also a job that power wheelchairs have yet to master. I suppose that a battery powered suction unit could be attached as well as a place to hold debris, but I haven't gotten around to inventing it. Therefore, I had to say that I don't do any household cleaning.

This particular interview also seemed to ask a lot about my mental abilities. I'm not sure if they think I'm old enough to start losing my acuity, but it was a source of several queries. One question was if I choose when to wake up. That morning, I had to have my night nurse get me up before he left and I did not have anyone during the day. Getting up at 6:30 in the morning what isn't really what I would have decided, but it is what was necessary.

After an hour long interview, everything was complete and the answers will be evaluated to determine what level of care I need. Hopefully nothing will change, or I may end up like last year with a decrease in hours that then needs corrected. Thankfully, I should have about a month until my next evaluation. At least they don't require much studying before hand!

Learning Hybrid Control

Last week, I had my annual visit to the dentist. The dental hygienist said everything looked good, but the dentist had a concern. After an x-ray, his thought was confirmed that one of my front teeth is absorbing the root. This is the same thing that happened in 2019 when I finally ended up with an implant in spring 2020.

For now, all is fine as I'm not having any pain. However, I'll likely need more intervention by next year if nothing changes. The doctor said my tooth problem is probably due to decades of using my mouth stick and having extra wear. Therefore, I've taken up a project to learn a hybrid approach for computer control.

Apple computer's operating system has voice control built-in, I just haven't used it. After my appointment, I briefly read about the voice option and activated it. Since then, I have been attempting to use it for regular tasks and decrease my stick use.

So far, I've used it to open and close programs, some mouse work, and dictation. Programs have done pretty well, but some that I regularly use don't seem to register. Reading is easier as I can just say "scroll down" and it automatically moves. Dictation isn't as bad as I expected, but still not great.

Trying to learn voice software while doing school work is not the best idea. Saying short phrases are better, but not single words. Trying to delete words sometimes works, but I often resort to just correcting with my stick. 

An issue we're learning though is to pay attention to what I say. Using a voice monitor, my parents hear me say scroll down, they hear I need to go down. So, I'm trying to pronounce more clearly and ask for help with more volume. I also need to drink more, which causes other needs.

Living the quad life has unusual challenges. I hope this hybrid method will help my teeth, but I don't see me completely switching to voice, at least not yet.

Which Way to Go?

In life, we have to make decisions on a regular basis. Most are pretty mundane, such as what to have for a meal or what to wear around the house. For these, the course taken doesn't have major consequences and can be adjusted easily. Major decisions often have good and bad circumstances for either choice and can alter a person's life. However, still other situations seem to not have any easy solution no matter what a person does. Right now, I am dealing with the last scenario, and it's a regular part of the quad life.

I have been working with pressure sores for many years. Thankfully, two of the three I had are completely healed. The third sore is doing well and measurements taken in late January showed it had shrunk since November. This is indeed good news, but I still need to be careful to stay off of it as much as possible, eat plenty of protein, and keep biking for circulation. That seems easy and is a very familiar way of life, until complications come.

For over a month, I have had more drainage from my trach button that continues to increase. For the last few weeks, it has also been red and even started growing a hole in my skin under the button. When I lay flat, with three pillows under my head, the skin gets scrunched, sore, and hurts more. Therefore, it's better for my neck to sit rather than lay flat. That is how a good predicament forms, one area of my body is better when flat and the other is better while sitting. Which way is the best to go?

Sometimes, I am able to get positioned on my side and let my skin be open to the air. This is good for both areas, but it limits what I can do. One of my caregivers and I experimented with getting the keyboard and mouse where I could reach it. I was able to use them, but very limited. Depending on what side I'm on, I have to either view the computer through a mirror or turn my head at odd angles that eventually start hurting my neck and button. I will do it for 45-60 minutes, but that's about all I can take.

Later this week, I plan to break my winter hibernation rule and see my ENT. Hopefully he will be able to help without making any major changes. The day after my appointment, I'm scheduled to open and give testimony at a virtual event for Iowa legislators. I will be home, but need to be able to speak clearly without distraction.

For now, I'm sitting in bed a little longer than I have been and it hasn't been causing an issue. I do like the extra time upright, but need to be careful not to do too much. I will see what another week will bring.

Snow Fish

The mild start we had to winter came to an abrupt end this week. Monday-Friday, Iowa had snow in various amounts. Monday and Tuesday had a winter storm warning with a blizzard warning on Friday. Dad has been clearing snow from our driveway, sidewalk, deck, and roof before having to do more clearing at work. He has been very tired, but keeps going.

My night nurse couldn't make it in Monday night and my Tuesday caregiver was ill and also couldn't come and only worked half days on Thursday and Friday. Therefore, my parents have had a busy week and I'm thankful for their care. In an attempt to make dad's life a little easier, I ended up making for another long afternoon.

A few years ago, my large plecostomus (cleaner fish) died and we quickly noticed my aquarium's algae increased rapidly. Dad purchased more algae eaters from local fish stores, but they died within a week,

or less. A friend, who is really into fish, suggested an online store that he has liked. Therefore, for the first time, I ordered live fish online. Checkout said shipping may be delayed due to weather, and I agreed. With a cold week of snow and next week forecast to be below 0, I guessed it would be a few weeks before they came. My estimate was wrong, they shipped Wednesday and arrived Thursday afternoon.

I kept tracking their progress and the delivery time continued to get delayed. Finally, three hours later than expected, the box was dropped at my door with no knock, doorbell, or other acknowledgement. Thankfully, mom was watching and swiftly retrieved the box from the frigid outdoors. Carefully opening the cold package, she eventually found the bag with very cold water and six objects in it, one that slightly moved.

Over the next few hours, she put the bag in a bowl of warm water to slowly start warming the new arrivals. As she did, movement started to increase and more signs of life appeared. When dad got home, he rearranged the lid of the aquarium so the bag could float on the water. The new fish now all seemed active and alive. Eventually, they joined the other tank dwellers and all seem happy and doing well.

Now, they have been swimming around and seem to be fine. I presume they arrived in some state of hibernation with the cold water and just needed to wake up. It's fun to see how God designed animals to adapt to different scenarios, including cold shipping boxes. Hopefully they do their job and love eating algae.

Living the quad life has unique times indeed. This week, I'll be staying inside. Hopefully it is a little calmer with other activities.