Monday, April 28, 2014

Yes, but No, or Maybe

Do you ever feel like you go forward one step, or wheel length, just to go backward further? I think we all do at some point, but some days more than others. Unfortunately, that's still the case with the insurance issues.

Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.

The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.

At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.

It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.

By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!

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.