Monday, April 21, 2014


As a quadriplegic, I end up laying flat in bed a lot. While my caregivers do various cares, I don't have much more to look at other than the ceiling. Therefore, I get rather familiar with the ceiling of wherever I'm at for an amount of time.

I remember the bunks of Recreation Unlimited in Ohio, where CHAMP Camp used to be held, very well. They were made to resemble an unfinished structure with wood beams and plywood left exposed. Through the many years I attended camp in Ohio, I almost looked forward to the familiar ceiling view. I can easily remember the different knots and filled wholes with small differences in color from the surrounding wood. As I lay getting ready for bed, or getting up in the morning, I could listen to the campers getting their cares done while my familiar view of wood became burned in my memory.

Hospitals have entirely different ceilings depending on where you're at. Some are just plain drop ceilings with a smorgasbord of stuff sticking through the tiles. Ceiling vents are full of small wholes from one end to the other making for a great way to take up time by counting every dot. Hallways are lined with lights and tiles with the operating room being consumed by huge lights that can move at all angles.

Too many years ago, when I was in my mid-teens, I was Craig Hospital near Denver, CO. They are one of the top hospitals for spinal cord injuries in the country, and I was there to evaluate the seat on my wheelchair. Unfortunately, they didn't do some of my cares as I needed and I ended up with a collapsed lung. That meant I had to move from my friendly, apartment style room with bright, friendly tiled ceiling, to the general hospital in a room with four other patients. This was a dark room with tracks for curtains blocking wondering eyes. Directly across from me was a kid a couple years younger than me who had just been injured. He didn't know what to expect in this new life and was flat in bed frequently. One time when he was gone somewhere, friends came and taped a poster above his bed. When he returned, I could see him grin from ear to ear at the new scenery he had been given.

Of course, the most familiar ceiling of all for me is my room at home. I can quickly spot the shapes in the popcorn texture and know each scratch, and frequent spider webs, in the track for my lift. In the two decades I've lived here, it is definitely home. With just over two weeks left, it's still uncertain where I will be living after May 7. If I will get familiar with a new ceiling, I don't know. The unique perspective that God has given me wherever I'm at will continue.

Monday, April 14, 2014


For the last few months, we have had several people in my family's church and friends' connections praying for a solution to the insurance problem. As last week's entry said, the answer we wanted did not come through. However, last Friday, we did receive a start in the right direction.

One of the programs my county DHS worker was trying to get did come through. It will cover one of my day nurses for 40 hours per week for three months. This is a long way from the average of 123 hours per week I get now, but it's a start. Also last week, we were told that my main night nurse had requested a six-month leave of absence. The nursing agency had already been looking for another nurse since August, so they were warning us that they didn't know if they could cover more than three nights a week. Tonight, a new nurse is scheduled to train to help fill in the gaps. I don't know where she came from, but it's another step in the right direction.

I have been saying that I continue to rely on God's direction, no matter where it takes me. These past several weeks have been difficult, but we are seeing the possible start of a solution. I just read this article about how God's timing has been evident with the creation ministry and how seemingly impossible circumstances were overcome. Looking back at the life I've been given, I can recount similar times as well.

After more than three years of planning, my family and I still didn't know what college I would attend, and where I would live, over a month after high school graduation. Two weeks before the final application deadline, the nursing company we were working with found enough caregivers to allow me to attend the college I wanted, outside of my hometown.

About three years later, I was close to reaching my lifetime cap on insurance and faced going on state insurance, which would only pay for me to be in a nursing home. Fortunately, a few months before the deadline, we were able to get me on a new plan that covered me until now.

May 7 is still a few weeks away, and more funding options and appeals are in the works. My parents and I have been trying to think of how we could make due with just 40 hours a week as well. In another week, we'll see what has come.

Monday, April 7, 2014

New Horizon

A couple weeks ago, I gave an update on what was happening with my insurance. On March 28, we were told that a panel of doctors were reviewing my case and decide what coverage I would get. That review would take 30-60 days and the decision would become effective immediately. The decision didn't take 30 days.

This morning, I received a call from insurance. Since I no longer use a vent,  they said I no longer need care. If I went back on the vent, I still wouldn't qualify. According to the policy, I have to either be improving to get off the vent, or have a progressive disease that I'm getting worse. Just have a spinal cord injury and being dependent on mechanical ventilation to breathe doesn't qualify. So, on May 7, I will no longer have nursing care.

I called the care facility I visited last year and let them know the situation. I'm going to be working on getting them my information over the next few days. I'm also planning on contacting the media. I don't think anything will change, but just so people know what's going on. I'm not real sure what to think of this development.

At least I'll be able to get my school talk in. Three are complete already with another one this week and the last one in a couple weeks. With the decision final, we at least don't have to wonder what's coming. My parents at least won't have to stay up nights anymore and can go on vacation without having to worry about my coverage.

This isn't the development we wanted, but God's will be done. I enjoy being able to go out and get in the sun when I want, but maybe that will continue. As the next few weeks fold out, I will find out more. I guess keep following to see as I learn what this new situation will be like. We'll wait and see what comes.

Monday, March 31, 2014


It's the time of year in Iowa that you're not sure if it's still winter or if spring is actually here. According to my thermometers, it got up to 75 degrees today. I went out to a doctor's appointment in my summer attire of t-shirt and shorts. It was a great change to what we've been experiencing.

Barefoot quad surrounded by snow
Early this evening, the sun was almost completely out, but it was also raining heavily with hail. Tonight, it's forecast to get down to 28 degrees with possible ice and snow. You kind of have to just prepare for almost any weather possibility in Iowa. A few weeks ago, we had snow covered yards, but warm air temps that felt like a nice spring day.

Today's appointment was an unplanned one. I started a new treatment on the newest wound a couple weeks ago. Unfortunately, it's growing larger at a rapid pace no matter what I do. Friday night and Saturday morning, my right hip and thigh had a large, hot, red splotchy area. This is one of the medication's side effects, but I also had a high temp, sore throat, and a lot of congestion.

We figured part of the congestion was due to flowers in my room that came from grandpa's funeral. Unfortunately, evicting them from my room only helped briefly. So today, after my wound doctor agreed, I visited my GP. With one look, he diagnosed me with severe strep throat. Now I'm on 24-hour house quarantine until I'm no longer contagious. That means I'll be missing my monthly church council meeting, but colder temps as well.

I'm thankful that I don't get ill very often, but it's unfortunate when the rare times cause me to miss something I'm active in. Fortunately, I didn't have a school talk tomorrow, the next one isn't until Friday. Hopefully by next week I'll be able to report an update on the insurance situation. Until then, have a great start to April.

Monday, March 24, 2014

Trains, Planes, and Tractors

Every so often, a random thought enters my head, finds a lot of open real estate, and moves on out the other ear. Looking back at my grandfather's life last week makes me wonder what I would have done differently in my current situation, and what I may have done if I didn't have a spinal cord injury (SCI).

If I went back about 15 years, I would have studied engineering more than information technology. I tend to quickly pickup on new technology, but I also do so with mechanical items. I love knowing how things work, seeing what ways they can be improved, and thinking how an item can simplify life. One add on I had on my flight simulator was called AfCad, it allowed you to manipulate airports in several ways. I wouldn't dare to guess how many hours I spent placing parking spots, arranging taxiways, and lining everything up to the closest centimeter possible.

However, as a web developer, I can work anywhere I have my computer and a good internet connection. I don't know enough about the industry, and different engineering degrees, to speculate on work conditions. In the case of planning an area for development, like the airport editor, I imagine some could be done from home after getting exact measurements of the land and needs. Completely changing history and imaging what I would have done without an SCI, thoughts really start spinning.

After high school, I think I would have joined the Air Force for a few years. My interest in planes isn't far behind trains, so it would be a good fit. I can imagine myself flying freighters across oceans to supply the troops or soaring across the sky at Mach 2 in an F-16.

The railroads tend to look favorably at veterans, so my next career move after the Air Force would be working for the BNSF, or smaller, railroad. As a locomotive engineer, I could fill my preference for not working in an office, but still enjoy the luxury of heat and air conditioning. What area of the country I would work in though, I couldn't guess. Different areas have varying appeal, but that changes with time. After working a day on the rails, I would come home to my acreage with a hobby farm.

Working solely as a farmer would be a little too much for my liking. However, about 15 acres would be great. I could have a small barn and pasture with about a dozen ship, a pond for fishing and swimming, and a large garden behind the house. This has been my dream house for many years, and would combine several of my interests.

With all these career plans, I would hope to be supporting my wife and a couple kids. Unfortunately, the railroad life doesn't leave a lot of time for family, so I would need to carefully prioritize time and evaluate life choices as the years accumulated.

Speculating about the what ifs can be fun, but I try not to do it often. We live the life given us by God and work toward His plan. The one I've been given is unique and I pray that I can continue to live it to the best of the abilities I have been given.

Monday, March 17, 2014

Life Changes

At times in our lives, there will be occasions that something comes up that will alter our life from the moment it happens. I'm in the midst of two of these moments.

Yesterday, my grandfather went to be with the Lord. As I wrote last week, he was suffering from complications of a fall and had emergency brain surgery. We thought he was showing signs of improvement Saturday, but Sunday he was completely healed. In Grandpa's 86 years, he taught his children and grandchildren how to serve and love the Lord.

For the first time since he returned from the Korean War, grandma spent the day without her husband of nearly 64 years. Grandpa was always there to help his family, and they covered numerous times when a nurse cancelled on us. Grandpa will be missed by all those who knew him, but we are glad to see him free of earthly burdens that troubled him greatly. The coming days, weeks, and years will be used to remember and live with the void we now feel.

The second change has been briefly mentioned in earlier posts, but not fully explained. Due to the Affordable Care Act, the insurance plan I'm currently on is being ended. I get it through my father's employer, who has been working on getting a new plan for the company.

What they started with, was a plan that would only allow me eight hours a week of assistance, I currently get about nineteen hours a day. My family worked with dad's employer and found a solution that we could keep the same provider. The provider then said we could even get the same coverage we already had, but we didn't have it writing yet. A short time later, the insurance provider changed their mind and said we would no longer be able to hire our own caregivers.

Hiring our own caregivers is what allows my family to keep my costs below what it would be to live in a nursing home. Without that being the, I would lose some of my state funding that also allows me to stay home. As I write this, insurance is keeping us in limbo as to which way they will decide to go.

My current plan expires on March 31, two weeks from now. At that time, I will either have no choice other than a care facility, or I will be on a new plan that allows everything to stay as is. In all things, trusting that God's plan will prevail, but it will remain to be seen what direction that plan takes us.

Tuesday, March 11, 2014

Role Reversal

We start with a great update from last week's entry. Despite everything looking against it, the Romeike family is now allowed to stay in the country! It was an unexpected, but great turn around that many had prayed would happen. Read the full story at this site.

I have had multiple surgeries for various different reasons. Several have been to relocate muscle and skin tissue to close pressure sores, while others, like my diaphragm pacemaker implant, have resulted in big improvements in my needs. Most of these procedures are followed by hospital stays, often in the Intensive Care Unit. Due to needing mechanical ventilation, I can only be placed in sections that have the skills and equipment I need. My family is quite familiar with the ICU and we know what to bring for entertainment and personal needs.

For me, it's almost like being on vacation. I get to work with different nurses, have new walls to look at, and generally can't do much other than watch TV. I also receive more visitors than normal and get to hear about what is happening in their life. I'm always looking forward to the end of these trips though and welcome the return to normalcy. This past week has had an unfortunate role reversal.

My grandfather on my mother's side has been having headaches since he fell and received a concussion in January. This past Friday, he went to the hospital with extreme pain in his head. It was found that he had blood on his brain and had emergency surgery Saturday afternoon to remove it. With his previous heart trouble, surgery in itself was a major risk, but he did thankfully make it through the four-hour ordeal.

On Sunday, I went with my parents to visit him in the ICU. He was heavily sedated, on a vent, and not responsive to any of us. This is what I expected to see, but it was odd being the visitor instead of the patient. A major difference with me is that, since I can't feel below my head, I'm very rarely ever in pain and therefore don't need medication for it. Seeing grandpa down and unresponsive was definitely a different experience.

In the two days since, he is now breathing on his own and sedatives have been adjusted. Unfortunately, he doesn't respond to anyone and only calms down when hearing scripture. We don't know if God's plans are to soon take him home or to be with us in different forms. Time will tell, but until then, we continue to pray for a great turn around, just like the Romeike family.