Tuesday, December 16, 2014

Wake Up Call

Everyone gets used to a familiar routine in their life. Every day has its set routine with each one being pretty much the same. In an average week, you can often guess what will be going on in the next because it changes very little, if at all. It's the same with the quad life.

Every morning I have a set routine of what I do to get going for the day. The schedule continues with being upright for a few hours, then down for a couple, lunch, and so on. Some of my nurses have been accused of copying their paperwork from previous shifts because nothing changes.

In many ways, this is a good thing, I know very well how to plan my day and it makes for easier training. About three years ago, I made a training book for my new nurses so they would have a written document to help them learn. Part of this manual is a daily schedule. Since I made it, only one item has needed to be adjusted.

All this sameness can lull a person into a sense of complacency. A holiday or appointment may break up the monotony, but life feels secure and routine. However, events sometimes occur that get us out of our routine and wake us up that life can change in an instant. That is what happened to me last night.

The nursing schedule changed due to someone being being ill, so the new caregiver worked last night, her third shift. Shortly after I finished my night scripture reading, we noticed my lower abdomen was moving kind of odd. It would start to expand as I took a breath, then the left side would suddenly bulge out. Somewhat like pushing on a balloon and one side bulges more than the other. I commented that she had a treat with something unusual to document. Unfortunately, it wasn't the only one.

About 1:45 in the morning I suddenly woke up. Junk from either my nose or lungs had collected in the back of my throat and I couldn't breathe. My pacemaker fired every four seconds to make my diaphragm contract, but nothing could get through. I could just barely start to clear my throat when the next breathe would initiate and plug everything up again.

My monitor that shows my heart rate and oxygen level started alarming that my oxygen was low and I couldn't speak. My caregiver noticed the commotion and came up beside my bed, but I couldn't tell her what to do. Thankfully, I was able to croak out to turn me on my back. As she did, the junk moved enough that I could clear my throat and start breathing again.

The entire incident maybe lasted a minute, but it felt longer and kept my heart rate up for quite a while. Shortly after, I went through what motion I do to indicate to take the plug off of my trache so I can breathe through it instead of my nose and mouth.

Just like in any life, something can happen in an instant that changes everything. Being dependent on mechanical ventilation for breathing, this is especially true. This lesson reminded me that you never know what will happen from one day to the next, it's all in God's plan. I am especially thankful I had a nurse with me that could respond immediately and help resolve the situation. That's it for this week in the quad life.

Tuesday, December 9, 2014

Wide Range

Sometime earlier this year I signed up for Scripture Typer. You select as many passages as you want and work to memorize them and type them from memory. It's good practice in remembering scripture, but it also keeps track of your typing speed. My average and peak speed are a bit of a difference from each other.


That gets displayed along the bottom of each page, along with the number of verses you've covered and other information. When you're typing, the page shows something like a speedometer that bounces up and down showing how fast you're going. I often get distracted by it and forget what I'm typing.

With an average of 31 WPM, I sometimes wonder what I'm at in other situations. Sometimes I feel like I'm closer to my maximum in these entries or emails, but other times much lower than my average. I'm still getting used to the bed with it moving frequently and having to adjust the keyboard as well. Spelling is my biggest problem on Scripture Typer though.

Any word that misspelled can't be entered, so you have to back it out and retype it, all while the timer keeps ticking. I used to do well at spelling, but thanks to auto correct on Microsoft Word and Mac, I'm definitely not very proficient any more. That last sentence alone required two word corrections.

After a busy Monday, this week looks pretty slow again. Highs in the 50's are predicted for the weekend though, so I'm hoping to get out to the tracks. That's all for this week in the quad life.

Wednesday, December 3, 2014

Last One

It has been a busy week, but I'm finally getting a chance to post. Last week I said we learned that it would not work for me to get nursing coverage through my own insurance. One of my case workers did some further investigating and found out I'm an oddity (no laughing).

In talking with my nursing agency, they said they don't have any private insurance companies that pay for nursing for their clients. They all have state funded services or have moved to a care facility. Apparently staying with what I we currently have is the best option.

Due to this development, my parents are going to try and see if we can do another year of staying on our current plan. Hopefully we won't need to go through all the work this year required to get everything covered.

After I graduated from college in 2003, Voc Rehab hired a job developer to help me find a job. After a few months, he decided that no employer would hire me due to potential insurance costs. Therefore, I was given the number to several nursing homes and told not to look for work. Now over ten years later, it seems like insurance wants to do the same thing.

Thankfully, quadriplegics like myself aren't very common, but there are a lot of us out there. In public and in my school talks, kids and adults don't know how to work with someone like me and what we can do. I keep working to change this thinking, but it's a long uphill battle. This week though, I did get to see a result of this work.

Sunday morning, I was sitting in my regular spot before church service had started and one of the boys I work with in Cadets came up to me and wanted help finding his family. A quick scan of the crowd found them and I directed him in the correct direction. Most people would forget this account quickly, but for me it was a victory of sorts.

I've been working with this kid since late last year and in that time he has learned to see me as any other adult. In the case Sunday, as someone he can go to for help. This is a rarity with a lot of people with severe disabilities, but doesn't need to be.

Hopefully my quad life can continue to help others, but we'll see what God has in the plan for this life in 2015 and the next week.

Tuesday, November 25, 2014

Dia de Gracius

Thanksgiving Day, or Dia de Gracis in Spanish, is upon us in the U.S. The special day of the year set aside especially to give thanks for God's blessings. It seems that many stores are trying to cut the holiday short and have people go shopping, but some are still honoring it.

No matter what circumstances someone is in, there is always some reason to give thanks. Life is often difficult fr various reasons, but we can be thankful for life itself and those around us. All the caregivers I have been blessed with throughout the life I've been given have helped me in every way possible and I'm thankful to have them. I'm especially thankful for the parents and family I've been given and all the help and frustrations they have gone through with me.

Despite days sometimes being too busy, I'm thankful for the work I've been given and the opportunities to go and speak. I'm also thankful for the volunteer activities I've been given both at church and the many years at CHAMP Camp.

There are groups that try to stop it, but I'm thankful for being able to freely, and openly, worship God in this country. I'm grateful for the ability to worship at church and study God's Word and study through multiple Christian organizations.

Even with all the trouble they've given my family this year, I'm thankful for funding that has allowed me to be home and active. I can be thankful that God has a plan for the life He has given me. I learned Monday that if I got my own insurance, it would not cover my needs, especially nursing.

My parents can't continue to pay so much to stay on my father's insurance; so we don't know what the future will look like. If I do have to go to a care facility, I'm thankful that there are a couple places in Iowa that may take me.

As you go through the next few days, be certain to stop and be thankful for what you have. No matter if you're living the quad life and have a body that doesn't work or some other circumstance, we can always give thanks.

Tuesday, November 18, 2014

Switching Up

Along with all the insurance trouble this summer, I also had changes in nurses. A long time night nurse had family trouble and took an indefinite time off to deal with it. She has since moved on to other work. Therefore, a new night person started in June. For ease, let's call this nurse Judy (not her real name).

Living in small town Iowa, nurses sometimes have to travel quite a ways to come and work with me. However, Judy actually lived close by and didn't have to drive very far. My nursing agency had wanted to shift her over to me from another client for a couple years, but it didn't work out until this summer. Judy has been doing very well with all my cares and has a great personality. Unfortunately, like many nurses, she is starting to get near retirement age.

The physical requirements of staying up and working nights have not gone well for Judy, and she has told the agency that she needs to go back to days. That means she'll be no longer working with me. Due to this development, another nurse was sent to train last night and is scheduled to come again tonight.

It's rare to find someone so quickly, so that was a good start. So far, she seems to be learning everything well and I hope that continues tonight. When she trained with Judy last night though, mom said the first question was how to get on days. Hopefully that won't be needed, but we'll see.

Caregivers through the nursing agencies seem to be hit or miss for how long they stay. I've had a few that stayed for several years, but others just a few months or weeks even. Getting used to a new person's mannerisms and how to work with them takes a while. With switching them up frequently, that gets to be a real challenge.

Hopefully this trainee will work and be able to come for several years. As with everything else, time and patience will tell. It's just a regular part of the quad life.

Monday, November 10, 2014

Mountain Seed

In my daily readings, I have been in the New Testament for about a month. I'm currently near the end of John in the morning and halfway through Acts in the evening. If you look back to early August's post, you will remember my schedule.

The first four books of the New Testament go through Jesus' time on earth and some of the miracles He did. The apostles were also enabled to do some as well. When the Holy Spirit was received by the apostles, and Paul, a number of miraculous healings are again recorded. In the two thousand years since then, I've been curious if some of these abilities have been passed down or if it was a one time thing.

Jesus said that if anyone has faith the size of a mustard seed, he can tell a mountain to throw itself into the sea. I haven't found any pesky mountains in my front yard lately, so I can't say I've wanted to move any. However, I believe mountains don't necessarily need to be made from dirt and rocks, they can be things that must be overcome in life.

My own personal thinking is that the power given to the early church following Christ's resurrection was a one-time thing. You occasionally hear about faith healers today, but any I've seen are in it for the money and could likely be labeled as more anti-Christs.

Having the ability to go out and boldly proclaim the gospel and back it up with miracles would be great to see. Really, people going out and just being bold for Christ and His word is great to see and hear these days. Unfortunately, I don't see these abilities returning until the return of Christ.

Just some random thoughts I've had the last few weeks. This coming week looks to be the first signs of winter, we'll see what comes by the next entry.

Monday, November 3, 2014

52 Plus a Few

Last October, I said I would start doing weekly updates. It has now been over a year and I've managed to make an entry at least once a week. At first I didn't think I could write so much and keep it somewhat interesting, but here we are.

The insurance trouble this year helped for a few weeks, but that has only been about seven of the posts. A lot of days, and weeks, are pretty much the same, but I'm realizing I do more activities than I thought. There have been several weeks, like this one, that I have had no idea what to write about, but something has come up for an idea.

I am currently planning on continuing the schedule, but I have no idea what it will be from one week to the next. I have been busy for the last few weeks, so it may generate a few tales to tell. One of which was Friday.

This was my first time speaking to nursing students. I had two classes of about thirty students each. They were not the bouncy kids I'm used to, but it was still fun. These classes were first year nursing students, so everything was new to them.

Going over the changing technology in wheelchairs and going from the vent to the DPS was fun to share. I showed a few pictures and the zip line video from camp and a few looked like they may be interested. I'm hoping to be able to go to more classes at this school in the spring as well as another school or two. Maybe I can get a schedule going of grade schools in the fall and colleges in the spring. If web work is slow, that will give me a few things to do at least.

A bit of a program note that I don't get notification of comment posts. Therefore, I only see them when I'm here once a week. I'm not ignoring anyone, I just don't see the post. We'll see what comes up next week.