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.

Sermon Writing Block

The year is winding down and cooler temps have started to replace the wonderful warmth of summer. That means it will not be long until my winter hibernation begins. Before it does though, I am scheduled to preach with two more groups.

Next Sunday afternoon, I agreed to speak at a local retirement home's church service. Once again, this will be a new experience and I'm not quite sure what I will be getting into. I have been told it is just like any other church service with singing and a time of studying Scripture. Therefore, I am preparing a message just as I normally do, at least I'm trying.

The last time I preached was September 1, and that was the conclusion of the twelve-week class I took. Trying to include everything that was required and then incorporating what was expected while preaching, it was a difficult message to give. I very frequently recycle messages and preach the same thing for different congregations. However, I don't plan to give that message again, at least not in the near future. Remembering class also makes me recall the falling away of the instructor and why I won't receive any tangible recognition of the effort.

I was scheduled to preach on October 6, and was asked to for October 13 as well, but I canceled and declined them. Being in the hospital at the time, I knew I wouldn't be ready to lead a church. Looking back at recovery the last few weeks, I'm thankful I did not agree to these invitations. Now, I'm a week away from preaching and have all these distractions in mind. I decided to make a new message for this group, but it hasn't been progressing as I had hoped.

One advantage I have is that I know the audience is all retirees, mostly in their 70's, 80's, and above. Therefore, my message doesn't need to fit multiple generations that are in various stages of life. I do have my passage determined and have written a message, but it still doesn't seem right. Hopefully with this week to go, it will get finalized to something I feel is good to present.

Such is the busy quad life, health concerns one week and sermon prep the next. Whatever I'm doing, I'm thankful to be used by God and trust Him wherever He leads.

Recovery Week

Another week has gone and I'm finally feeling back to normal, primarily anyway.

As I wrote in the final entry for my hospital stay, I was starting to improve. The first four days home felt like a struggle to do anything for more than 15 minutes without feeling completely exhausted. In the last ten days, I think I've taken more purposeful naps than I have in the last ten years. What bothered me most, was knowing I had work to do.

Most of the web work I do doesn't have a big impact on business and waiting an extra week, or more, for an update won't be a major problem. Yes, it means people won't get to preview their church bulletins early or review the latest sermon as quickly, but they will come eventually. Of course this round of hospital stays couldn't have been worse for one client.

A few weeks prior to my medical hiatus, I had been working with a long-term client and a web designer to get their new site online. We had communication trouble at first, as well as some challenges in getting logistics figured out, but the client's site finally got moved for the world to see. The next day was when I had my first ER visit.

My friend John has access to my email and business information and was monitoring everything for me. Unfortunately, a problem came up that potential customers couldn't contact my client due to a form not working. In my head, I knew exactly what needed to be done, but it has been several years since John helped with any "hands on" web development. Trying to explain the necessary steps with little voice didn't go well. It was the first thing I forced myself to do when I got home, but one of the steps didn't work as usual. The issue was finally resolved Wednesday, but I feel bad it was delayed over a week because of my health.

Part of hospital stays also include getting blood tests and an I.V. However, I'm a very hard stick and my right arm looked like I had lost a fight when I got home due to all the bruising. Thankfully, it has also returned to normal and doesn't look like any permanent damage. 

Now, I need to find a way for my parents to get time to recover. They had hoped to have a day on their own Friday, but my day caregiver was only able to do half her shift. Such is the story of the quad life family, but I pray this new week will be back to normal routine.

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.