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.

Who to Trust?

Most people have someone they look up to or admire. For kids, it may be their parents, and adults may point to athletes, experts in various fields, or even pastors. Whoever the person is, the admirer usually wants to be more like them and learn from their success. Unfortunately, we need to be very careful when looking to fellow mankind as people held in high esteem can, and do, fail.

On September 1, I concluded my class on preaching after nearly 12-weeks of work. The main instructor was Dr. Steve Lawson, who had 28 lectures about 30-minutes each. I have heard Dr. Lawson preach a number of times and mostly enjoyed his messages. The final video for class included tips on growing in preaching by listening to other pastors and a reminder to live what you preach. If you preach on not stealing, but take funds from an employer for example. you're not living as a Christian pastor. James 3:1 says that not many should become teachers, or preachers, as they will be held in higher judgment.

A few days ago, I was on YouTube and a suggested video came up from a Christian news source I follow. The main heading read, "Steve Lawson Removed from Pastoral Ministry." Watching the episode, I learned that Dr. Lawson had reported to his church leadership that he had an inappropriate relationship with a woman. As a result, he was immediately removed from his role as lead pastor and will be gone for an indefinite period of time.

Dr. Lawson is a man who many looked up to as a model pastor and have learned much from his teaching, I am one of them. This came as quite the surprise for a lot of people, but it's also a reminder that everyone has temptation, the heart is deceitfully wicked, and no one is good. That includes me and every pastor or leader anywhere.

We need to look to God alone as our admiration and to follow His teaching. Jesus was greatly tempted, but yet never sinned. He then took our punishment that all who trust in Him alone will be saved.

I pray for Dr. Lawson and all those who struggle with temptation. Living the quad life does not free me from wanting to go my own way instead of God's. Let this reminder make us check our own heart and to cut temptation however needed.

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.