Sanctity of Life

Watching the news and having some awareness of international news is something I think is important for everyone. However, it can be very depressing at times and especially as a Christian, makes me see how bad the world is getting.

Recently, Iceland has declared that they have eliminated Down syndrome in their country. In order to achieve this goal, any pregnancy that tests show to have this syndrome are automatically aborted. Reasoning is given that this children would not have a good quality of life and should therefore be killed prior to birth.

In October, Frank Stephens, a man with Down syndrome, addressed the U.S. House Appropriations Subcommittee. During his presentation, Stephens told how he has a good and active life and is very much worth living. He then went on to address the trend in some areas of curing disease by killing the patient. I highly recommend listening to his entire presentation, Stephens makes good points on a serious topic and still gets a few laughs.

As I have gone to schools, colleges, and just out in public, I find that a lot of people just aren't familiar with disabilities. Most just haven't had any exposure and therefore are unaware, but others don't care either. When a government entity comes along and says this population struggles with life and abortion is the "kind" option, they blindly follow along. Somehow that sounds very similar to Germany in the 1940's.

By this same reasoning, I could easily see the practice expanded to other types of disabilities, such as those of us living the quad life. We often can't breathe on our own, require assistance for absolutely everything, and some live in care facilities or just stay home most of the time. It sounds harsh, but I don't think it's long before countries like Ireland make this line of argument as well.

No matter what a person's abilities, we must remember that ALL life is precious in God's eyes and we are the pinnacle of His creation. Life is so sacred that He sent His son to die for our sins and was raised to life again so that we may have eternal life with Him. As we start the last week before Christmas, remember this is the reason we celebrate and to cherish every life He has put on this earth.

Eating Self

It hasn't been completely back to normal this week, but it gets closer every day. I had dentist, hair cut, and biking in Des Moines once again. Everything went well, except for some news from the dentist.

First, I had a a new dental hygienist to break in. I normally stay in my chair for appointments, so he was having a challenge finding the best angle to get to me and see everything. At one point, the suction device ended up on my eye and I was thankful I had them closed. He did say my teeth looked a little worn for my age which resulted in explaining how I use my mouth stick to type and do anything.

After the hygienist finished, my dentist poked around and didn't like the feel of one of my teeth. It's the same tooth he did a root canal on a couple years ago and he was curious if problems were happening again. This meant going back to the new guy and figuring out how to x-rays. Since he's new to my dentist, the hygienist also doesn't have his own room. Therefore, we ended up putting the x-ray machine in the hall for my picture while another patient was getting worked on a few feet away.

The image showed the tooth is having absorption just below the jaw line, or basically eating itself. My previous root canal was done to stop the same process, but it didn't last very long. In further discussion, my dentist said the only solution is to pull the tooth. It's in the front right of my mouth, so his suggestion is to then get an implant so I can continue to use my stick and drive my chair as I do now. However, the entire process takes about six months.

Of course it's also considered cosmetic, so my insurance likely won't cover it. Ever since the diagnosis, I've been paying closer attention of how I hold my stick in relation to the tooth. For now, we're not doing anything, but he said at some point it will likely break off if not taken care of soon.

I'm thankful I have access to good dental care and a solution is possible. I know when I was a kid I managed my mouth stick through losing baby teeth and waiting for the new one to return. Whatever God has in store for this quad life, I will be carried through.

Quad Oddities

Anyone with high spinal cord injuries has a condition called autonomic dysreflexia, or AD for short. Whenever something is going on in the body, such as needing to use the bathroom, the person's blood pressure will go up. In my case, it happens for something as simple as passing gas and will cause my blood pressure to go up or down for a few minutes. It's very common and those who know me hardly notice it.

While in the hospital last week, it was part of their routine to take my blood pressure (BP) every four hours. On Monday, the nurses noticed my I.V. wasn't working anymore, so it was removed. They couldn't find another place to put one, so we chose to leave it out as I wasn't using it much anyway. Early that evening, it was time to take my BP, except it happened to be while I was having minor AD. My pressure came back low, at about 78/50. This is a little down from my usual, but not a lot. However, it's apparently very low for most people.

Within about two minutes, I had at least five nurses in my room all wondering what to do and retaking my BP via different methods. I tried saying this wasn't unusual and shouldn't be a concern, but my comments didn't get anywhere. My parents were also visiting at the time and tried to say the same. The nurses concluded I needed to quickly get some fluids by I.V. to help bring everything up, but I no longer had one. Therefore, I ended up having one placed via a type of ultrasound and getting the needle in a larger vein.

After the fluids, everything was good again, and was long before due to no longer in AD. I'm very glad the nurses were responsive and worked to solve the problem. I almost find it comical though that a dangerously high BP received no response a few days earlier and a not very unusual result had a large response.

On Tuesday, my doctor wanted to keep me a little longer in order to monitor everything further. Thankfully, she was willing to listen and I was able to help teach her about normal responses with SCI. The explanation satisfied her enough that I was released a few hours earlier than originally planned.

Since returning home, I have been very tired when doing much of any activity. Thankfully, yesterday I was finally feeling back to normal and have been today as well. Like it or not, I've been living the quad life for over three decades and I should expect longer recovery times for these situations. I'm thankful for God's continued care through so many people and look forward to a regular week again.

Finally Home

Last week's illness continued to persist and get worse. Finally, on Tuesday morning I went up to the ER in Des Moines. Even after a rough ride, my belly still looked like I was pregnant. Initial x-rays showed a sluggish bowel and possible treatment would be surgery and/or a tube to pump out my stomach.

This wasn't my first experience with this situation, I had it in 2010 while working at CHAMP Camp and again in 2012. Both times involved long stents with an NG tube. However, I was on the vent both of those times. This time, I was concerned about how well I could breathe with my diaphragm pacemaker and half my nose plugged. Therefore, we decided to wait and try other treatment options.

The next few days consisted of a liquid diet and multiple med additions to get everything working. Friday night into Saturday morning is when it really hit hard. As I lay flat in bed, my belly looked like I was ready to give birth. Everything I could feel was in extreme pain. I requested a blood pressure check and found out it was 184/147 (my normal is around 90/50). My doctor thought it was helpful and chose not to treat the pressure, so I waited with every fast and hard heart beat for the subsequent stroke, but it never came.

By morning, it was decided to place the tube. If I had trouble breathing, then it could be removed after a couple hours. The nurse first tried a large tube just like my previous times, but it wouldn't go in. After some supply hunting, she tried a much smaller tube and it went in without any trouble. For the first hour, I was very concentrated on my breathing, but everything went well.

Over the weekend, more than four litters of junk was suctioned out and I finally started to improve. On Monday, the tube was removed and I had a free nose again. The liquid diet of beef broth tasted good in some way. Unfortunately, I don't think anything could have made the strained chicken noodle soup tasty. Tuesday was back to regular food, just slowly, as well as to home.

During this week I missed Thanksgiving, two family Thanksgiving parties, and my birthday. Had I trusted in God's care completely and done the NG tube Tuesday already, I could have likely saved a lot of time and discomfort. When I look at my daily reading schedule and how much I missed, it's a visual reminder as well. Friday night's experience also reinforced what I know that suffering in this world can be extreme, but is nothing compared to what is to come for those who ignore God's saving grace.

Yesterday and today have been a light-headed quad life and I can tell it has been a rough week. My next entry will hopefully continue to show improvement and God's continued grace.

Dragging On

In last week's post, I was having issues with congestion and suctioning. I would like to give a great progress report today, but it has still been hanging around.

On Wednesday, my doctor contacted me that lab test results showed I was on the wrong antibiotic and that was why I wasn't improving. Unfortunately, the new one he prescribed had possible interactions with another med I use. After several phone calls, I finally got it Thursday night and am hoping it starts working soon. That wasn't my main concern though for the night.

I do passive range of motion (PROM) exercises four times a day to keep everything mobile. On Thursday afternoon, my caregiver was doing my PROM while we watched a webinar on osteoporosis

Stretching hip and knee

and SCI. When she was stretching my leg up, we both heard a small pop. My knees and hips like to pop on occasion and my caregiver thought it was her thumb we heard. My leg moved fine and everything around my hip felt normal to her, so we assumed everything was fine.

Later in the evening, I was up in my chair for a meeting for church. However, I noticed I hadn't had one muscle spasm since doing PROM. It was too cold to go barefoot as I usually do, and when my shoes were put on, I also had no reaction whatsoever. Normally, my legs jump and kick a lot when putting anything on my feet, but nothing. The trend continued all evening during my meeting.

When my night nurse came and got me undressed for the night, I still had no reaction. This was exactly how my body reacted both times I broke my femurs and it was beginning to concern me. She felt further and did find swelling on my inner leg. After a family consultation at 11:30 at night, we decided to be careful during the night and get checked at the hospital in the morning. Living in small town Iowa, I would get better care at home than overnight in the hospital anyway.

Friday morning x-rays revealed that everything was intact. The doctor could see where the bone was broke and not fixed properly in 2001 (another long story), but nothing this time. So we're guessing it is a pulled muscle and I'm just staying in bed for a few days and doing ice packs a few times a day.

After preaching on how to respond during times of trial and watching about osteoporosis (which I do have), my mind was wondering what was next. I'm thankful everything is intact and it will hopefully be a quick fix. Twelve hours of no spasms was an odd time for the quad life and I'm somewhat thankful they returned. Hopefully this week will be much less eventful.

Busy November Illness

This past week has been full of experiences and busyness and one I would only partially want to repeat.

I'm thankfully very rarely ill, but the past 10 days has seemed like all I do is suction. My nose has been full, making breathing uneasy, and then requiring my lungs to be cleared out. I have been fortunate that I haven't had much pain, but it has been coming on occasion as well. Even with a full week on an antibiotic, I can't tell any difference.

On top of being sick, I was gone to Des Moines nearly two full days for doctors' appointments, biking, and picking up new equipment. When I was home, work seemed to keep piling up without making much progress.

Preacher Joel

Saturday saw the completion of a site I've been rebuilding for a couple months. Everything was ready to go live to the public, but then I couldn't get it to transfer correctly from my test location to the client's site. I spent most of Saturday afternoon and evening and almost all of Monday working on it. I'm very pleased to be able to say that it is now up and running for all to see.

This Sunday was my preaching debut as well. With having trouble breathing and a sore throat, I was really wondering if I would be able to do it. Sunday afternoon was about one of the worst days I had as well, but thankfully cleared up well by time for church.

During the sermon, I could feel my throat getting more sore and dry as I went, but was able to get mostly everything included. If I get another opportunity to preach, I pray it will be with better health and voice.

I hope my next entry will be closer to usual time and have better health report. The remainder of this week looks like a calm quad life at least.

Handyman

This week, my teeth have been yelling at me more than usual for some reason. When I try to do much while flat, they start to complain. So instead of my usual farming simulator while down, I have been watching more videos.

A friend suggested a few series on Netflix that I started watching Wednesday. One is "Zumbo's Just Desserts" and is a competition for amateur bakers to make different desserts. They come up with some very tasty looking creations during the show. The only problem is that I then get hungry for chocolate. Fortunately I don't have much candy leftover from Halloween, and I shouldn't eat too much.

The second show I started watching is "Canada's Worst Handyman." Netflix seems to like showing how bad Canadian's are at simple tasks, but I like watching them as well. One of the handymen consistently uses a hammer to put in screws and another has electrocuted himself multiple times. I know some people have no mechanical skills at all, but these people make it much more entertaining.

Yesterday I was able to observe the opposite of a bad handyman. When my friend Ken died last year, he left me his old computer. It took some work from John to get around the password and upgrade it, but it has now been sitting in my house waiting to use. My parents and I thought it be good to use for my caregivers to use, but it didn't fit on our computer desk.

Dad spent most of the day taking the stand apart, cutting notches out of some boards, and putting it back together again. The computer now fits on the stand perfectly and you have to look close to notice the changes. At least until I said it on here.

I'm thankful that dad was given good mechanical skills in a variety of areas. They have come in handy on many occasions and allowed me to have a more active quad life. Whatever gifts God has given you, make sure to use them to their full potential. The body of Christ has many members fulfilling different needs. I pray I will continue to be useful and active in all the ways I've been given.