Tuesday, July 19, 2016

Upgrade or Downgrade?

When I received my spinal cord injury in 1985, portable ventilators were not very common. Fortunately, two options existed at the time and my parents chose a model called the PLV-100 by
Respironics. It ran quieter than the other type and seemed to work well.

For the next couple decades, this is what I used to get every breathe. I had one vent on my chair and another by my bed equipped with a humidifier. In college, my original machines were replaced with new ones of the same model and the same company, completely covered by insurance.

When I received my diaphragm pacemaker in late 2010, I continued to use my green box while I transitioned to the new system and kept them available for backup. They remained close by at all times, until last month.

With the beginning of the year, my insurance decided it would be like Medicaid and start renting vents instead of paying for them. Even though my machines were purchased around 2002, my equipment provider started receiving rental checks for both machines every month. This increased monthly maintenance fees by a factor of 12 and meant I had to update to newer models, even if I
New vent alongside suction machine
didn't want to change.

Therefore, I have now have two new vents still by Respironics, but this time a Trilogy. The large green machines are now smaller and blue, but also much noisier when operating. In talking with my respiratory therapist that does regular maintenance checks, the new machines are also not as reliable as the old.

Fortunately, it has been a few years since I have used a traditional vent for any length of time. If I did have to go back on it, this system should also be able to go on the back of my chair if needed. I wouldn't be able to make people hear me, but I would be breathing at least.

Some days in the quad life make me wonder if people who make these machines actually know someone who uses them or just looks at statistics and cost. In any case, I'm thankful that this technology exists and has worked well for so many years. I was told that some of the old vents are being taken for use in third world countries, so they will get used by people that need them. We'll see what another week will bring.

Wednesday, July 13, 2016

One Year of Working Legs

One year has now passed since I first wrote about my working legs and using the FES bike. In the year, I have had 26 sessions (24 visits) and biked nearly 55 miles with my own legs. I have also put about 1,900 miles on the van in traveling to and from Des Moines to go biking.

In this time I have seen my leg muscles increase in size and generally stay much less spastic for about a day after a session. One nurse has noticed the start of improved circulation in my legs and my skin doctor has also seen circulation increased to help wound healing.

I no longer grin like a child when biking, but it is still a very great feeling. Seeing my legs actually moving on their own, and getting exercise is not like anything else I do. The sensation I get from feeling them move in a regular cycle is a wonderful change to just usually having no movement. A change was made to my stimulation settings a few weeks ago and I was beginning to feel what I think was pain in my one leg. I didn't think this was good though, so yesterday they were adjusted back a little.

After missing a few months this winter, I have mainly been going weekly since late February. The increase in frequency has been a good change in decreasing muscle spasms. When I have been able to go twice a week it's even better. I can only guess how 3-4 days a week would go, but it would certainly be great to have calm muscles that still get good exercise.

At this point, it looks like I will continue to travel to Des Moines to use the system. Unfortunately, policies for insurance and the bike company don't exactly work well together. This has been a busy part of the quad life this year in coordinating time to get to the bike and get a session in, but it is one I'm very thankful I can do. This video from last week is what each time looks like, just with better audio in real life. Until next week, we'll see what comes!

Wednesday, July 6, 2016

Playing Catch-Up

I have always heard people say they need a vacation after a vacation. I can especially understand that when the occasion is spent keeping busy at volunteer work. For me, I wouldn't have time for another trip. It feels like I have been busy and trying to get caught up since returning over a week ago.

With web work being slow this year, I didn't have a lot waiting for me when I returned. There were over 500 messages in my inbox, but several were from Facebook and did not acquire my attention. They were all cleaned out within two days and backed up work completed on late Monday. The main culprit has been medical needs.

At camp I was able to tilt a lot of the time and not give pressure directly on my skin sores. Two of the areas had very little if any change, but the third did worsen a little. Therefore, instead of sitting in bed for two hours and then laying flat for two, I'm doing 90 minutes up and three hours down. This has already helped, but it makes it difficult to accomplish much.

Since returning, I have also had regular appointments, trips to Des Moines, getting a new vent (maybe a later post), and had more work come due to a new month. I had originally planned on doing this post a few days ago, but finally was able to take time for it.

Monday my family and I celebrated Independence Day with some friends at their house. It was good to get out again and enjoy fresh air while watching fireworks. The display was good, but I kept getting distracted by the surrounding stars. I'm not in my chair and outside very often when the stars are out, so it was fun seeing God's creation displayed while celebrating our independence to serve Him.

This afternoon had a break from the busyness of summer, but I don't expect it to last. A busy quad life is a good challenge to have, but so is taking time to stop and gauze up for a few minutes.

Monday, June 27, 2016

One Dozen Years

Once again CHAMP Camp came for another year. However, unlike the last two years of just visiting, I was able to finally go as a counselor. This year was my twelfth as a counselor and 19th total years of attending.

Counselors arrived the day before campers in order to get to know the kids' cares and how to work with them. It felt a bit strange to have some counselors in their third year and I haven't met them before. It was even more the case when campers came Sunday afternoon. I had a good learning curve in new names and was thankful for name tags.

I was with a cabin of five younger boys. Only one was new this year, but I only knew one of them from my previous weeks. I loved getting to work with the kids again and see them accomplish new goals. One had the impression I was a chopping board as he would park right beside me and make his hand do a chopping motion on my arms. If I had my mouth stick, I would have chopped back, but he was fun to play with.

Due to space constraints, I slept in another building from the campers, along with dad and my night help. It was nice having our own space, but it still means you miss out on some time with the kids. Dad and I were also in charge of fishing, so that took up our morning in both running the poles and cleaning up afterward. It was a warm week in Indiana, so part of clean up included dad getting a new shirt and washing up.

Outdoor activities were rearranged Wednesday due to rain, so it was good cabin time with our campers. The zip line opened up in the afternoon and after the kids went, I was able to make a run. I didn't get video this time. but it was just as much, if not more, fun than last time.

It was a good week and I'm very thankful I was able to go. Unfortunately, I really noticed the quad life challenges this time. With fishing and going back and forth between cabins, it was a lot of work for my dad. My night assistant was also only able to get a few hours of sleep during the day. Also, on the way up, I didn't do well with traveling tilted for so long and rough roads.

I don't know what God has in store for the next year, but this one did at least come together. Right now, I'm uncertain about trying again, but I will see what comes.

Sunday, June 19, 2016

Father's Day

Father's Day for my family unfortunately doesn't get much attention. If I'm able to go CHAMP Camp, it usually means dad and I are gone for the week. I would like to find a way around it, but I don't see it happening unless camp changes schedules or I no longer, which is possible. However, that's not the case this year.

I rely on my dad for a lot of my medical care when I don't have a nurse. Mom can't do large physical work like move or turn me, so it falls on him. Over the decades, I have met many families that the son or daughter is like me and requires a lot of help for daily living. Unfortunately, most end up in a single parent household with the father not involved.

We have our tough times and struggles, but thankfully through God's leading my family hasn't followed the norm. There are more things than I can begin to list that I do with my dad that not everyone can relate. We both enjoy watching trains together and I'm told we act a lot alike. However, I'm not so sure the last point is always a good thing.

With working many hours at work every week, then doing things around the house, I would love to see dad's responsibilities decrease. That likely won't happen soon either, but time will tell. Hopefully his duties at work can be shared with others and I continue to have caregivers that can cover my needs.

The thing I'm most thankful for is that dad is an example of what it is like to follow our Father in heaven. He doesn't get everything right, but demonstrates what it is to love your family as Christ loves the church. Also showing that trusting in God's plan is what we all need to do.

This quad life has been greatly enhanced by the care and love God has given me through dad. I'm thankful to have him and even if I can't give a break on his day, I can at least share our story with you.

Monday, June 13, 2016

Summer Storm

About 5:30 Saturday morning I was laying in bed awake wishing I was asleep. As I reminded myself of the long day I had coming, I heard a sound in the distance. Far off I could a faint roll of thunder through the early morning sounds. As my self argument continued, I could hear the approaching storm, but it never came close.

Several minutes later, the welcome sound of rain hitting the roof came, but it lasted a brief moment until it was gone. The rolling thunder made its presence known a few more times, but never coming near. When day came, the sun revealed a landscape showing little notice of the drink and still parched.

In many ways, this is how I feel life has been for me lately. All of 2016 has been slow with work and I keep feeling like a transition is coming. I contacted more schools this spring in anticipation of increasing talks, but not as much came as I expected. Two new grade schools were added to the schedule, but not any colleges. Now I have been approached for two potential web site redesigns this summer. Like Saturday's thunder, will these amount to work or just go off in the distance?

May was the first month this year that had every night covered by the nursing agency allowing my parents to sleep and be active during the day. We had high hopes it would continue, but both Saturday nights this month have not been covered and another time is coming that only part of the time is filled.

The ebb and flow of this life is hard to tell what is coming. A steady, set routine for more aspects would often be nice, but it depends on what routine rules out. However, I'm well aware that's something unknown in the quad life, or anyone else.

Anticipation for possible things to come is good, however keeping an eye on what you currently have and can do is even better.

Monday, June 6, 2016

Busy Day of Rest

Why is it that sometimes days that are meant to be for resting and recouping can end up busier than regular days? Saturday night, I once again did not have a night nurse. We did the normal routine of mom and I staying up until nearly 2:00 and dad takes over.

For me, I actually slept fairly well and was awake enough to do my morning routine and get to church. After some singing, it was the normal time to settle down and hear the sermon. However, God must have wanted to wake us up as a bat started flying around the sanctuary. The Pastor tried to continue, but couldn't keep everyone's attention.

After several loops from the bat, and odd sounds and movements from everyone, the distraction was removed. The comment was made that it took six people to get one bat, but it worked. The service resumed as usual and we can now add another critter to the list that has been in our services (miniature horse, dog, sheep, and now bat). Yes, this is rural Iowa and animals are easily obtained for helpful teaching points.

With church a little later than usual, we got home, changed clothes, and then met with my mom's side of the family for lunch. Everyone enjoyed great food, talked a while, and watched the great-grand-kids play. A few hours later, it was time to head back home for my afternoon cares. Just after getting home, I was greeted by two emails for urgent updates on a client's web site.

Everything together can make for a busy day, but I do enjoy them when they come. I saw some of my cousins' kids that I haven't seen since Christmas and get caught up again with them. As the surprise church visitor showed us, anything can happen at any time.

Keeping focus on where it needs to be is sometimes very difficult at times, including in the quad life. This week looks to remain busy as well, but I'll see if any surprises are included.