Progress Made in Answers

Sometimes, I have to wait long periods for insurance approvals and then see what treatment I will be allowed to use. This week was not one of those times and progress was made on getting questions answered, but not sure on full solutions.

Tuesday was the first visit of the week. Jeff, a technician for my diaphragm pacemaker, flew in to Des Moines and arrived in my bedroom at noon, just as planned. I reiterated what I had experienced and he was soon off to work on my DPS patch.

While Jeff works on the wires, the system doesn't work and I have to breath on my own. I had anticipated a lengthy time of breathing exercise, but just two three-minute periods was all he needed. The old silicon that had become like glue was removed, wires inspected, and new silicon added for protection. He said it usually happens when the patch gets wet. I couldn't think of a time it had, but noted to be more aware of it.

The repair maybe took 10 minutes total. I have seen Jeff a couple times in my 15+ years of using the DPS and we always got along well. After another 30 minutes of getting caught up, he headed back to the airport to catch his flight home. I don't know how his company does these maintenance visits so easily, but I'm very appreciative of them.

Thursday evening, I emailed my wheelchair tech to see if I could get scheduled for a pressure mapping of my chair. After a few messages Friday morning, he was in my room that afternoon with the needed equipment. My day caregiver had called off sick, but thankfully dad was available to move me around.

First, he noticed my chair's seat cushion was low on air, even though it had been pumped up a few weeks ago. Submerging the cushion in my parent's bathtub confirmed no air leaks, so it was dried off and further inflated. After I was sat in my chair, the cushion was partially deflated to its optimal thickness. Testing with the mapping system showed everything looking good.

Unlike last November, I also asked to test my bed while sitting. It took a few tries to get the system properly placed, but it did reveal increased pressure in the area I'm having trouble. The colors didn't look bad to me, but he recommended sitting in bed for 30 minutes at a time, 45 at the most. My usual schedule is 1-1.5 hours of sitting and then flat for the same period. That already makes it difficult to get work done, cutting time down further will be very hard to do. I could possibly do more while in my chair, but my computer and everything else isn't setup for it.

As of this writing, I haven't changed my schedule much, but have shortened upright time a little. I'm scheduled to preach the next two weeks and will have end/beginning of the month items to do for web work. As I always say, living the quad life has challenges. No matter what, I will rely on God's guidance and strength to get through.

What's a Schedule?

In Proverbs, we read that man makes many plans, but it is the Lord's purpose that prevails. This week has been one of change and adjustment.

Tuesday, Sara, my day-time caregiver, thought the new skin area was looking worse. Therefore, I called my dermatologist to see if I could get in any earlier than my late July appointment. A few hours later, I had an appointment for Thursday that someone had cancelled. This was good news, but required rescheduling my hair cut. That is actually a challenging task, but was done.

My doctor wasn't too concerned and said it currently looks superficial. However, he doubled a steroid I've been taking to encourage protein absorption. He also ordered a new treatment to the area, but insurance is now debating if they will cover it or not. I'm thankful to be making more effort in this area, but that's not the only problem.

Every few weeks, my caregivers change a patch on the right side of my chest that connects to my diaphragm pacemaker. In the first few years I had it, I had trouble with wires getting damaged and not working. The solution at that time was to put some silicone gel to restore connection. That worked, but other improvements made this need obsolete and everything has been working well for at least a decade.

For about a month, when changing the patch, one of my caregivers said the silicone was getting sticky and adhering to the dressing over it. I consulted with my other caregivers and an expert nurse on the system, and they weren't concerned. Early this week, I had a different nurse change the patch, and he had the same issue, but maybe a little worse. Wednesday morning, I emailed a different technician on the DPS than I did previously to check his thoughts. He now has flight plans and should arrive Tuesday to work on my patch. What one person thought was fine, another says it needs immediate repair.

Things I had planned to do this week didn't happen and what I hadn't expected to do did happen. Late Tuesday morning, I spoke to a class of Occupational Therapy Assistants. One of their questions was if I could work a full-time job. I answered that I did a couple full-time temp jobs after college, but that was 23 years ago. At this point in the quad life, especially with my caregiver schedule, it would not be a possibility. It seems like I spend an increasing amount of time just trying to maintain my health. 

With all these unexpected twists, I'm especially thankful for my dad. He continues to make sure I have a working vehicle I can use and works at least full-time so I can keep medical insurance. As my physical needs change, I also become more dependent on his care when I don't have caregivers.

God has blessed me with great parents that do so much for me. I never know how long we will be able to continue, but am thankful for all the years so far and look forward to another week to come. 

Watching Time Pass

This week has been a lesson in how time passes. In some situations, it can go quickly, but I also watch the clock to see if it can move any faster.

On Monday afternoon, I received a call from the hospital to go over everything for surgery. It was the usual routine of going over my meds and medical history. However, the nurse on the phone became quickly confused. She asked if I would need help to pivot to transfer out of my chair and to bring the remote for my pacemaker. I helped clarify that I can't control anything below my shoulders and would need a lift or multiple people to help lift. My explanation made sense and that was all.

As requested, I arrived at the hospital at noon Thursday for a 2:00 surgery time. That was also the time snow and ice were predicted to arrive in Des Moines, so dad kindly went with my caregiver Sara and I. With him, I no longer needed a lift, but I did explain my DPS multiple times to various nurses and a few doctors.

I saw my regular ENT briefly as he said I would be his second procedure of the day, but the first had already been delayed due to OR availability. After watching 2:00 come and go, I finally saw him again a little after 4:00. I was thankful Sara and I could play games on our phones and watch dad's computer, but time still passed slowly.

Since it was a minor procedure, I was only lightly sedated for most of the process. As my ENT cleared out excess tissue from my trach area, he wondered how I had been breathing. Placing the trach button and further work went beyond local numbing and with a nod, my eyes closed in the OR and reopened in a recovery room. Thankfully, everything went well and was relatively simple. I'm very thankful to have a clear airway again suctioning is now easier. Snow and wind on the way home wasn't too bad, but we were thankful for dad's help and a little slower commute that usual. 

My neck feels pretty good, but it was sore if I did too much Friday. Therefore, I spaced out my regular web updates and watched familiar voices play games online. The place I watch them is called Twitch and it came up with a recap of my year. One screen showed how many hours I have spent watching people play. My top person was over 120 hours, with the next over 100. I would not have guessed these figures, but it demonstrated the difference in perception of time passage.

Whether you're living the quad life or not, be sure to always take time to spend in God's Word and come to Him. At some point, our time in this life will end and then go to eternity in either heaven or hell. The gift of eternal life with Christ is what we celebrate this Christmas, take ample time to reflect and spend with Him. 

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.

Looking Back at 40 Years

February is always a month of transition for me. The last major, long-lasting, storms of winter and cold air usually subside and start to give way to spring. As I write this week's entry, a long stretch of sub-zero temperatures has ended and the thermostat is above freezing. February 20 is also the anniversary of entering the quad life. This years marked the 40th anniversary of that journey that started on a cold winter evening.

The last few days, I posted an entry on my Facebook page and a video on my YouTube channel to mark the date. Seeing the comments has relived support from so many over the decades, and memories of all that has happened.

As a three-year-old, I didn't fully realize what was going on with my body. I don't remember waking up to a realization one day, but just gradual acceptance of this was just my life. My parents were told I would be walking by the time I was ten, which was also about how long I would live. More than four times than that has passed, and I'm still here, but not walking.

When my parents won the battle to bring me home again and live a "regular" life, they were warned I would constantly be sick. I went through grade school, high school, and college without any major illness. Pressure sores were, and are, a problem, but that wasn't due to classmates.

Technology has also vastly improved with now using the diaphragm pacemaker, FES bike, and general antibiotics. I greatly miss having uninterrupted speech on the vent, but enjoy having natural breathing.

Unfortunately, I've lost many quad friends that have not been given this many years. I sometimes wonder why God chose to bless me this way, but I try to work for Him however I can. What this next year, and new decade, will bring, I don't know. Whatever it is, I trust God and His lead in everything.

Three Beeps

As technology continues to increase around us, we become more familiar with its sounds. Going to checkout lines at stores, we hear beeps as each item is scanned. At home, the beeps of a microwave, or oven, signal that our meal is ready to be eaten. When you can't breathe on your own, beeps from the device you're connected to are especially important.

For a quarter century, I knew every alarm from my ventilator very well. A short beep indicated high pressure and something was clogging the tubes, or me. A continuous alarm indicated low pressure with either a tube disconnected or I was breathing too shallow while sleeping. In 2010, after receiving my diaphragm pacemaker, I had to learn a new system of beeps from my electronic attachment.

I know well that two beeps in rapid succession mean the battery is low and needs changed. The initial warning supposedly indicates 24 hours remaining, but I've never tested it that long to see. If I didn't already realize I wasn't breathing, a series of three beeps followed by two more mean it's disconnected and not working. I learned a few years ago this is an international standard that indicates a major medical warning. In other words, beeps have become so integrated into our world, they now have national standards. Starting around late November, I heard a new sequence of three beeps I wasn't familiar with.

They happened very rarely and seemingly with no apparent cause. My breathing wasn't affected, so I let it go for a while as an oddity. A few weeks ago, I finally asked Synapse Biomedical, my pacemaker's developer, what they meant. They had me send pictures of the wires that come from my chest to try to spot any damage. Everything looked fine to my caregiver and I, but they spotted something that could be the issue.

Communicating by email Wednesday morning resulted in a company representative flying in and standing at my bed side Thursday afternoon. He moved wires around in every direction, but couldn't duplicate the beeps. Therefore, he carefully trimmed the delicate wires that protrude from my body and reconnected them as normal. Everything seemed to be fine, until the three beeps were again heard Friday morning. They continued sporadically last weekend and early this past week as well.

In frustration, I had my caregiver change the cable that goes between me and the DPS control unit. Since that change Thursday morning, the beeps have yet to return as I write this on Saturday evening.

Living the quad life has days of uncertainty, guessing, and learning. This week I learned that my beeping electronic friend may just be saying a simple change is needed. I'm also thankful for quick response to problems and the reminder from God of every breath He provides.

Are You Prepared to Flee?

The new year is less than two weeks old, and the last seven days have seen devastation in various forms in the country. First, a winter storm hit from Kansas, to Missouri, Indiana, and further east. It dumped large amounts of snow, closing many roads and leaving motorists stranded on the roads.

Second, wild fires in southern California went through suburbs of Los Angeles burning multi-million dollar homes to the ground. Some of the residences were right on the beach with a clear view of water, but they still couldn't be saved. Occasions like these make me think what I would do in these situations and consider how to prepare.

Thankfully, Iowa was spared from this latest winter weather, but we're not unfamiliar with it. For the most part, if you stay home and don't try to head out, it won't be a big issue. In my situation, it likely means no caregivers for a day or two, but that's about it. My town mostly has underground power lines that aren't affected by snow and I try to make sure I have plenty of supplies on hand. Fire is a completely different situation though.

In California, some residents waited until the last minute to evacuate, or chose to stay home and try to protect their house with garden hoses. I saw reports that people were filling their cars with belongings, only to abandon them in grid-locked traffic and flee on foot. The vehicles then had to be bulldozed out of the way for fire trucks to get through.

If I had to evacuate quickly, it would be a mess, especially if I was in bed. Using my lift takes about 10 minutes to get me in my chair. Along with my wheelchair, I would also need my backup diaphragm pacemaker and the wires and brackets that go along with it. After breathing and locomotion, I also have equipment for bathroom needs as well as clearing out my lungs. Just thinking of it all would likely take more time than I had.

I can be thankful that God has not allowed such a situation to occur in my quad life. However, it's something all of us should probably have in mind, and prepare an emergency kit, just in case. Now that we're starting a new week, I pray it will be calmer for everyone. Whatever may come, it's good to remember that God is in control.

Losing Another Friend

Living the quad life means you're generally living alone. Yes, I'm surrounded by family and caregivers at all times, but I rarely see any other high-level quadriplegics. There are a few other wheelchair users in my small town, other than elderly, but none have the same health needs like me. Therefore, I have learned to advocate for my needs and how to teach medical professionals.

When I was a kid, and adult, I enjoyed spending time at CHAMP Camp every summer. It was a fun week, but also a time to be around other people like myself. Thankfully, social media has allowed much easier contact for all kinds of social groups, including quadriplegics. I have posted about friends I have met this way before, and one of them was Chuck Foss.

I was introduced to Chuck through a quad friend's wife. Through initial introduction, I learned Chuck lived in Maine and received his spinal cord injury four years before me. That makes him the longest living quadriplegic I have met. For most of Chuck's SCI years, he also used a diaphragm pacemaker similar to mine. Chuck's advice was very helpful when I was transitioning off the vent and it helped me get on the pacemaker faster.

Chuck and I communicated a few times by email and video chat, but never met in person. Our most recent collaboration was helping with a Christian outreach packet he was working on. I was thankful to see his good grasp of the Christian faith and doing more evangelism than many others do.

Tuesday afternoon, I was checking Facebook, and saw a notice that Chuck had passed away a few days earlier. He was 58 years old and lived 43 years after receiving his injury at age 15. Messaging Chuck's sister, I learned he died after a major bowel surgery that did not heal properly. This post is now one month after I was hospitalized for digestive problems.

I have seen many quad friends pass away, but Chuck is the first to have more injured years than me. That means I now move up to the second longest living quadriplegic I know. I don't know if God will give me another four years, but I do pray to live it for His glory. Chuck will be missed by all who knew him, but I'm thankful that he is now free of earthly trouble and has entered eternity with a new body in the presence of God.

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.

Relaxing Busy Week?

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

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

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

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

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

Upgraded Breathing

On November 15, 2010, I had surgery to implant my diaphragmatic pacemaker system. In the 12 years since then, I have used the system to breathe and have generally enjoyed it. However, I had to get used to infrequent checks on the system.

For more than 25 years, I was used to having both my ventilators checked for maintenance every month. With the DPS, few hospitals are even aware of the system, let alone having people to come check on them. After getting the implant in 2010, I went home with two control units, or the actual pacemaker, that makes the system function.

Around 2012, I had my settings adjusted to get a larger breath. That process meant new pacemakers were sent to me with the different stimulation settings and I sent back my existing units. Therefore, I received new controllers at that time, but haven't since.

After some communication about a wire concern in October, it was realized my pacemakers hadn't been updated for quite some time. This past week, a representative from Synapse flew from Ohio to Des Moines to meet with me. He exchanged my old controllers for new versions, discussed changes, and any problems we could work on.

It was nice to get excellent attention when needed and I like the look of the new units. They work exactly the same, but are smaller than what I've been using. Other upgrades allow me to use a regular alkaline battery instead of lithium in case supplies are hard to get. I'm hopeful I won't need to do that, but it's good the option exists. Alarms have also been changed, which will take getting used to, but it now meets some international alarm requirements.

Living the quad life means using specialized equipment that is fun to watch improve. Of course breathing independently is best, but I'm thankful God has given us this technology to help in our fallen world.

Neck Trouble Continues

In October 2015, I was able to do something I never thought would be possible. After five years of using the diaphragm pacemaker and not needing a regular ventilator, I got rid of my regular trach and replaced it with a trach button. I loved the feeling of not having trach ties around my neck and the pain I was getting from the trach rubbing my throat.

It has been seven years since that change and it has gone very well. Several months after getting the button, I discovered it was very hard to remove and would likely need to be yanked out. However, I hoped that wouldn't need to happen for many years to come. Unfortunately, it looks like my time will be up this coming Tuesday.

All summer, I have had a lot of trouble with drainage coming from the button. I have been using a tissue under my shirts to try and keep them clean, otherwise I go through 2-3 shirts per day due to my neck. My doctor tried burning off granulation tissue twice with a chemical called silver nitrite and once with a laser. We also did two rounds of oral antibiotics, but none of the attempts made any lasting impact.

Therefore, he is now going to try to remove my trach button and put in a new one that I have for backup. If something doesn't go right, then my doctor will put a regular trach in to hopefully allow for healing. An added complication is that the company who made my button stopped producing them a couple years after I got mine. Therefore, I can't get any new ones and can only try what I have on hand.

The doctor gave me the option of going to an operating room to change the button, but that adds further logistical problems. Instead, I will be fully awake with full feeling for the procedure. To say the least, I'm not looking forward to this appointment. However, something needs to be done to try to stop the drainage.

I'm praying I will not need to go back to the regular trach again. Part of the problem I was having in 2015 is that it was starting to rub a hole in my throat due to being flat so much. I am still doing the flat routine and obviously do not want to have holes in my airway. I've heard of other quads that have had this rubbing and it pokes a hole in a major artery and they bleed to death in under a minute.

Such is the quad life sometimes, but I'm thankful for the years I have been able to be free of a trach. Whatever happens, I know God is in control and I will continue to look to Him in all circumstances.

Virtual Interviews

Two years ago, I was selected to be on an advocacy group called the Olmstead Group. They work to make sure people living with disabilities in Iowa are as independent as possible. At our last meeting, one of the new members said they were doing a podcast that interviewed persons with disabilities. It sounded like something I would qualify to do and volunteered to help. This past Thursday was my day to be interviewed.

Prior to my time of being questioned, mom wondered if I had listened to the podcast before, what was it called, and what was I expected to talk about. All of these were good inquiries, but none of which I could answer. The person I had been corresponding with said they just "go with the flow" and don't really have planned topics. I also didn't receive information on where to find anything to preview.

Therefore, when my scheduled time arrived, I had no firm idea what to expect. I was fairly certain I knew my own life well enough to talk about it though. My caregiver also called off sick for the day, which meant mom was with me while I was questioned.

For nearly an hour, I talked about my history and why I'm too lazy to lift a finger. I also went over my experiences in school, looking for work after college, and what I do now. However, I did receive a question I prayed would come and had somewhat planned a response. When asked about how I stay positive (or something similar, it was a few days ago), I got to share about being a Christian and looking to God for everything. Yes, some days are worse than others, but I know that as someone that has broken God's commands, I deserve nothing other than eternal punishment in hell. However, I have been extremely blessed instead.

I will be allowed to preview the podcast in about a month and was told it should come out around January. I thought the experience went okay, but mom said I did a fantastic job. I was glad to hear she thought it went well. Later this week, I'm also scheduled to be part of a webinar talking about the diaphragm pacemaker system. The busy quad life continues, but I'm thankful for another and hopefully being able to help others from the experiences God has given me.

Banging my Head to Beat my Chest

Not having the ability to breathe independently presents a few challenges in life. Thankfully, God has provided tools to help take care of problems living in a fallen world. The item I talk about the most is my diaphragm pacemaker (DPS), but that's not the only item I use to keep my lungs in good shape.

Since I can't control my diaphragm, I can't cough on my own. I have learned how to manipulate my breathing to somewhat mimic a cough, but I still need help moving junk around in my lungs. Since the time of my injury, I have used a chest percussion treatment (CPT) twice, or more, every night. I have nicknamed the procedure my nightly thumping, or beating, and my nurses are happy to say it's time to beat Joel.

The CPT is simply a hand-held wand that vibrates and gets moved up and down my chest and back. Combined with turning from side-to-side, it helps keep any junk in my lungs lose and easier to suction out if needed. I can't feel it, but I'm told it feels good and I have woken up to nurses using it on sore shoulder or back muscles during the night.

For many years, the machine I used was called a Flimm Fighter. It worked well, but the cord between the machine's base and wand would break after years of getting wrapped up. After I gave my machine to be fixed once, it was replaced with a newer version that has all the mechanism in one piece, with a long power outlet to the wall.

The new version is smaller, but it's heavier for my nurses to hold and the wire between the wall and unit often resembles a pile of spaghetti. This is very prone to connections becoming lose and the machine not working. This has been the case for about the last six months with trading out my CPT with a loaner to get fixed. Mine gets returned, only for the problem to occur again a few weeks later. If it doesn't work, then the only option is to pound on my chest, and back, by hand. The cycle has become annoying and feels like I'm banging my head on a wall.

I started searching for an alternate solution, but few people use a CPT anymore and instead utilize a vest that does a similar treatment with air. However, it's not an option for me due to my DPS wires. In working with my new pulmonologist, he also doesn't know of any alternatives. Therefore, it looks like the cycle of equipment problems will continue. When I received my CPT back a few days ago after another round of maintenance, the solution offered was to hit the device on something and that should help it. When you're told to hit your medical equipment with a hammer to make it work, you know it has design flaws.

Such is the quad life sometimes. I'm thankful God has provided equipment that has helped more for 36 years. However, I think more frequently I should have pursued a career in engineering to help with medical devices. I will see if everything functions this week, but won't hold my breath (I can't anyway).

Time, or not to Time

The end of October has been busy for speaking engagements. Last week, I posted about doing the virtual training with OT students. Friday morning, I was the chapel speaker at a small Christian school, and this morning I preached. Reviewing and keeping each presentation separate in my head was a challenge, but timing my talks was another issue.

When I started speaking at grade schools over 15 years ago, I carefully monitored my watch to see when my allotted time was up. I didn't want to take too much of the teacher's day and also keep the students' attention. I still do similar today, especially when visiting multiple rooms, but not quite as carefully and judge by how the kids are reacting. Colleges, I try to keep around an hour, but most are okay with going over and having less time with the instructor.

Last week's virtual class was very strict on time, but not the latest two events. I could go anywhere from 10-20 minutes with chapel and the remaining period would be filled with an activity. Therefore, I just talked and allowed however long it took. With preaching, I have started taking the same method. I very rarely look at my watch and primarily just go until everything I had planned is finished. Some in the congregation may not agree with this method, but I'm only an infrequent preacher anyway.

The big thing I worked on with my last two sermons was timing my Scripture reading. My biggest complaint, or regret, about my diaphragm pacemaker is pausing to take a breath every four seconds. I can hide it fairly well in normal speech, but not when reading. Therefore, I try to plan what to read, when to pause, and try to make it sound natural. Getting to read God's Word is a privilege that many people around the world don't have; and reformers like John Wycliffe gave their life for making the Bible available to everyone. I want to present it as clearly as possible, but the breathing quad life adds a challenge.

After today, I'm not scheduled to preach, or speak, anywhere until late November. That is also the latest in the year I generally agree to go anywhere. However, this weekend already feels like winter; hopefully it's not a prelude of what's to come in months ahead.

Printing a Button

For 30 years, I used a tracheostomy (trach) to connect to my ventilator and help access my lungs to clear them out. However, I had to use a special size that required some work when I ordered new ones. Eventually though, it always worked out and I got what I needed. In 2015, I switched to a trach button and looked forward to easier replacement parts. Unfortunately, that didn't last very long.

Just like my trach, the button has two pieces. An outer sleeve that always stays in my throat and a button, or vent adapter, that slips into it. The button completely seals off the hole in my throat so I breathe through my nose and mouth. It can get dirty at times, so I change the button once a week. I had a set of three, so I could have one in use and two for cleaning and backup.

Somehow, one of the three went missing at some point. I'm guessing it was during one of my camp trips that it may have been left behind, but it was never found. I wasn't comfortable with having just one extra, and went to order another one. In that process, my equipment company learned the button I use was no longer available, and hadn't been for about a year. That was over a year ago, and I have been searching for a solution ever since.

The button is nothing other than a block of plastic molded in the proper shape. I wondered if a 3D printer could be a solution, but wasn't sure where to look. I brought up the problem with my ENT last month and he knew someone that had made printed solutions for him before. Over the next few days, I released my one spare plug to a nurse I had barely met for her college age sons to measure and print. It was quickly returned to me, and I waited for the results.

After several email exchanges, the final product was in my position. Three new blue plugs to test with my external sleeve. This week, my nurse and I tried the new buttons in my spare outer sleeves. Two of them fit well, but one didn't. The printer couldn't quite get them smooth, but they look like they should work. As of this writing though, I haven't tried them in my neck. That may come as a future update when I feel adventurous.

I'm thankful for God's provisions throughout the life He has given me. Living the quad life has its challenges, but at least it means few days are boring.

Sticky Face

For over 25 years, I only used my nose for breathing out. If it was a little stuffy or clogged, it didn't make much difference to my breathing. Now that I have uses it both directions for a few years, the trouble of stuffiness has become an issue.

At night, I sleep completely on my side at about 90° to the bed. It's great for getting my back off the sheet for once, but my left side is also very difficult for breathing. I try to struggle to bring in air, but my nose is just too tight and I often end up on my back again. It's not very conducive to sleep and doesn't help with skin trouble either. Therefore, I talked to my ENT about it a few weeks ago.

He said two parts of the body of the body continue to grow with age, ears and nose tissue. I would also add lower abdomen, but this was new information to me. Investigating further, he noticed my nose looked fairly closed. It's likely due to not getting full use for so long, but that can't be changed. The doctor said I had two choices, extensive surgery, or try a breathe right.

Nose itching

I haven't added any surgeries to my extensive list lately, but opted to try the second option first. The first struggle was figuring out how to get them to stay in place. My night nurses would hold it in place tightly, but it kept popping off as soon as they let go. One tried rubbing the skin with an alcohol wipe, drying, and then applying the strip. Thankfully, this process worked for at part of the night. Therefore, in order to sleep, I now take 2-3 medications and also use alcohol every night.

Since I sleep with a pillow over my head, and on my side, the breathing aide frequently comes at least partially off during the night. While it's place though, it is much easier to breathe. When it comes off in the morning, my nose is left with glue on it. Even after washing, it doesn't fully come off until it wears off.

My nose is something I can feel very well, especially when it itches. Since I try to be as independent as possible, I frequently itch my nose by pushing my lip up either on my own or with my mouth stick. I noticed my lip kept feeling sticky though the last several days, but wasn't sure why. It finally dawned on me that it's likely coming from the glue residue on my nose. Such is the quad life, getting myself in sticky situations.

I have been attempting to wash more, and itch less, and it seems to be helping. I'm thankful for simple solutions and learning to adapt with changes. Next week will be another project from this doctor's visit, if my mouth isn't stuck shut.

Doctor Changes

As you can imagine, living the quad life means I have several doctors. I have my general physician (GP), along with a variety of specialists. As the decades have passed, some of these doctors have changed due to retirement or me moving on in life from pediatric to adult care. Most of them have been around for many years though.

One of these specialists has been my pulmonologist, Dr. Hicklin. After my first pulmonary doctor retired, I was transferred to Hicklin. I don't remember the exact year, but it was somewhere around the mid to late 90's that I started seeing him.

Photo from the Iowa Clinic

For someone that can't breathe independently, I thankfully have very little trouble with my lungs. Generally, I see my pulmonologist twice a year for a general checkup. We chat for a few minutes about life in general, he listens to my lungs, and that's it. The ten-minute or less visit costs insurance a fair amount, but it's what they require.

In 2009 and 2010, Dr. Hicklin was a key part in helping me get approved for my diaphragmatic pacemaker system. Again in 2014, he was also a big help in getting nurses covered with my insurance changes. For both of these situations, he helped with a lot of research, talking with other doctors, my insurance, and working to get what I needed.

Due to virus restrictions, I visited with Dr. Hicklin in May through a virtual visit. About a month later, he helped get a prescription for a new pulse oximeter to monitor my oxygen levels. This week, I saw online that Dr. Hicklin unexpectedly passed away on July 17. I met with another one of my doctors, ENT, this week who said they exchanged text messages that day and he seemed okay.

I called the pulmonary department Friday to see what I'll need to do to get switched to another physician. After more than two decades with one person, it will take time to get used to someone new, and they with me. I pray they are as dedicated as Dr. Hicklin was and that I can feel comfortable with their care.

It also serves as a reminder that we don't know when our time will come to leave this life. We always need to be prepared, and be careful to do God's will.

Missing Moments

April has now passed, to mostly everyone's relief. It was a complete month of quarantine for much of the world, with not doing much of anything except staying in the house. I cancelled or rescheduled a few appointments, but hope to get them done soon.

My first cancellation was a hair cut on April 2. I normally get a trim every four weeks and like keeping my hair short. Now, it has been over eight weeks since getting my ears lowered and they are starting to hide. I've seen some people take to desperate measures and do their own hair. I haven't gotten to that point, yet, but look forward to getting my normal due back instead of the current don't.

The second item that was skipped was my Botox. I get Botox injections in my right arm to reduce muscle spasms and help protect the wires and plugin for my diaphragm pacemaker. However, the drug dissipates and needs to be updated every three months. Now that I'm nearing four months without a boost, I am noticing my arm pull into my chest more when it shakes. I'm trying to make extra sure everyone keeps a pillow on my side for protection, but some of my caregivers don't. Thankfully, I haven't had any major issues, but hope I don't need to wait through July to get an update.

It wasn't scheduled, but I normally speak to a class of third graders in Des Moines in April. With schools meeting virtually, I didn't try to contact the teacher. However, I miss working with the students and seeing how they react to Mr. Joel's way of writing and interacting with God's world.

Finally, I miss getting out to church every week and fellowship with fellow believers. Watching praise songs and sermons online is handy, but not in the spring when I'm able to get out again.

In Iowa, the state is now slowly opening up again with restrictions on occupancy and keeping groups separated. My church is planning to try a regular service again in a few weeks, but my family isn't sure if we'll head out by then or not. Living the quad life has challenges, and a global pandemic doesn't help. However, I continue to be thankful for God's protection and the ability to still keep active while sheltered in place.

Trusting in 2020

Living the quad life, I have to have a lot of trust in those that help me with my every day activities. That's especially true when it comes to doing anything with my breathing.

My diaphragm pacemaker has a port on the right side of my chest. A small plastic bracket sits securely in a dressing that's near my ribs. Unfortunately, it gets bumped on occasion and everything pops out of place. For my regular caregivers, most can get it back in place within a few seconds. However, my new night assistant has accidentally pulled it out three times this month already.

In order to get the plastic bracket in place, the wire for my pacemaker needs to be unplugged. Therefore, I don't get stimulated to breathe during this process. There is a bit of a trick to getting it back in place, and he is learning quickly, but it does still take a couple minutes. I am able to somewhat breathe on my own, but winter congestion makes it a challenge and during these learning experiences, I need to trust God's hand through my caregiver.

On Thursday, I needed to pick a few things from Wal-Mart and got out on the record setting high day to run errands. When I returned to the parking lot, I waited to get in the van while my assistant loaded my purchases in the vehicle. Wondering around the van, I saw a minivan parked near us that had a wheelchair ramp.

The ramp was down, with the van's doors open, packages on the back seat, and nobody around. We thought this way an odd situation, but further investigating confirmed no one was in the vehicle. My assistant and I got in my van, but didn't feel right just leaving the other vehicle, that also had a purse in it. After sitting for another 20 minutes, the minivan's owner finally rolled up and into her van. She didn't act surprised it was still open, but I guess just trusted nothing would be touched. As we sat waiting, few people noticed it, but two other nearby occupied cars seemed to be doing the same thing we were.

Some people are concerned what will happen in 2020 in the political arena as well as world relations. They are appropriate concerns, but we need to remember God is in control of all things. I will be watching as events unfold this year, but trusting in God's plan will be my main thought, even if everything seems to be going wrong. I pray that my readers here will as well and see what another week will bring.