The last Monday in November means we're just in time for Thanksgiving. Unfortunately, since last week I can't report any progress on the wounds, but there are always things to be thankful for.
It sounds like next month will have most of the night shifts covered as long as weather isn't an issue. Therefore, tomorrow should be our last late night until Christmas.
Another item is that I started on a new site project late last week. I first heard about it in August, but then the designer left her company for another job. However, the site owner went to another company and they gave me the design. It's apparent this person hasn't designed for a web site before, but it's a good project.
For the last few days I have been having trouble with stuffed up nose and needing suctioned (clearing lungs mechanically) a lot. I haven't felt bad, but have been petty tired. This evening has gone well, but I didn't get a chance to think about what to write tonight. Maybe after Thursday more will come up to talk about.
Have a happy Thanksgiving!
Monday, November 25, 2013
Monday, November 18, 2013
Caregivers
Monday seems to come quickly while Friday is late in coming. It is once again time for another installment of The Quad Life.
Following up from last week's post, the pressure sores have improved! Two separate people at different times confirmed with measurements that they have indeed improved in the past six weeks. I'm very thankful to hear this news to answered prayer. However, early Sunday morning, my night nurse informed me that a third place has now opened on my butt. At least two of them are improving at this time.
The big news this week though is about caregivers. As a vent dependent quad, they are a requirement to have 24 hours a day, seven days a week, every week of the year. Their are no caregiver holidays in the quad life either, so someone is always within ear shot if not within a few feet. For me, that means caregivers through a nursing agency, private hire, and family.
For the past several months, my family and other caregivers have been having trouble with an agency nurse. They escalated in the past few weeks to where I had to have stop coming. Since the agency has been unsuccessfully looking for a replacement for a few months, this now means we have one night a week not covered. I did not want to do this to my parents, but being scared about getting physical harm is not a way to live either. I like living in rural Iowa, but being an hour away from a metropolitan area makes finding help a challenge.
A major cough or flu has also been going around in my area and my main day caregiver has become ill with it. So, that means starting tomorrow morning, I have 24 hours without my regular caregivers. That means my parents will be missing work as they do a tag team of covering the day and be short on sleep as the night is covered. They do very well, but I'm concerned about aggravating the pressure wounds as I don't get moved as much as I usually do.
These are days I pray to be few and far between with strength given to all three of us to work through them. The night situation will be the most difficult, but I pray that a solution will be found soon. This past week has seen answered prayers, maybe this week will as well.
Following up from last week's post, the pressure sores have improved! Two separate people at different times confirmed with measurements that they have indeed improved in the past six weeks. I'm very thankful to hear this news to answered prayer. However, early Sunday morning, my night nurse informed me that a third place has now opened on my butt. At least two of them are improving at this time.
The big news this week though is about caregivers. As a vent dependent quad, they are a requirement to have 24 hours a day, seven days a week, every week of the year. Their are no caregiver holidays in the quad life either, so someone is always within ear shot if not within a few feet. For me, that means caregivers through a nursing agency, private hire, and family.
For the past several months, my family and other caregivers have been having trouble with an agency nurse. They escalated in the past few weeks to where I had to have stop coming. Since the agency has been unsuccessfully looking for a replacement for a few months, this now means we have one night a week not covered. I did not want to do this to my parents, but being scared about getting physical harm is not a way to live either. I like living in rural Iowa, but being an hour away from a metropolitan area makes finding help a challenge.
A major cough or flu has also been going around in my area and my main day caregiver has become ill with it. So, that means starting tomorrow morning, I have 24 hours without my regular caregivers. That means my parents will be missing work as they do a tag team of covering the day and be short on sleep as the night is covered. They do very well, but I'm concerned about aggravating the pressure wounds as I don't get moved as much as I usually do.
These are days I pray to be few and far between with strength given to all three of us to work through them. The night situation will be the most difficult, but I pray that a solution will be found soon. This past week has seen answered prayers, maybe this week will as well.
Monday, November 11, 2013
Videos
For the past several weeks, I have been working on a video from my point of view. I had a camera strapped to my head and tried to show things I normally do. It didn't turn out exactly as I had it planned, but it still did pretty well.
When I started it, the weather was still warm, so I had my normal attire of t-shirt and shorts. Of course I ran out of time to do everything in one day, so I needed to record multiple times. Between camera trouble and busyness of life, it ended up taking over a month to compile. I finally finished the last segment Saturday, meaning I was outside in summer outfit in November. It did feel pretty nice, but it was only in the upper 50's. While I was going about my business of how I get in the van, a guy drove by on a lawnmower wearing a coat and stocking cap. I have yet to get any comments from someone that noticed, but I'm sure it will come.
This was also the first time I used my camera and associated software to do anything other than shorten and upload a video. It was a bit of a learning curve, but not bad. Unfortunately, I noticed after I uploaded it that it had cut off the bottom of the shot where my hands and legs were. I specifically retook segments because they weren't showing my view with hands and knees in peripheral vision. So, I figured out how to adjust it and uploaded again. The final product does give a good overview, but things could still be better.
Saturday was also a video day for demonstrating stick skills on camera. Some people have asked me how I do things with a mouth stick, so I finally will be able to show them. The video didn't get nearly as close in as we thought it was, but it still shows pretty well. After I put it together, it came to 20 minutes long! I started uploading to YouTube, but it was estimated to take ten hours to get online. I have a doctor's appointment tomorrow, so I think I will have the video upload while I'm out.
These productions were fun projects, but not ones I care to repeat. As I've heard other people say, I don't like hearing my own voice. I also really noticed the breaks I take while pacing and the shoulder shrugging on the stick video. It's a major drawback of this breathing system, one I'm still struggling to come to terms with.
Tomorrow's appointment will be to check progress on my pressure sores. My assistants think they're improving, so we'll see what the doctors say. Hopefully by next week I can report an improvement in that area.
When I started it, the weather was still warm, so I had my normal attire of t-shirt and shorts. Of course I ran out of time to do everything in one day, so I needed to record multiple times. Between camera trouble and busyness of life, it ended up taking over a month to compile. I finally finished the last segment Saturday, meaning I was outside in summer outfit in November. It did feel pretty nice, but it was only in the upper 50's. While I was going about my business of how I get in the van, a guy drove by on a lawnmower wearing a coat and stocking cap. I have yet to get any comments from someone that noticed, but I'm sure it will come.
This was also the first time I used my camera and associated software to do anything other than shorten and upload a video. It was a bit of a learning curve, but not bad. Unfortunately, I noticed after I uploaded it that it had cut off the bottom of the shot where my hands and legs were. I specifically retook segments because they weren't showing my view with hands and knees in peripheral vision. So, I figured out how to adjust it and uploaded again. The final product does give a good overview, but things could still be better.
Saturday was also a video day for demonstrating stick skills on camera. Some people have asked me how I do things with a mouth stick, so I finally will be able to show them. The video didn't get nearly as close in as we thought it was, but it still shows pretty well. After I put it together, it came to 20 minutes long! I started uploading to YouTube, but it was estimated to take ten hours to get online. I have a doctor's appointment tomorrow, so I think I will have the video upload while I'm out.
These productions were fun projects, but not ones I care to repeat. As I've heard other people say, I don't like hearing my own voice. I also really noticed the breaks I take while pacing and the shoulder shrugging on the stick video. It's a major drawback of this breathing system, one I'm still struggling to come to terms with.
Tomorrow's appointment will be to check progress on my pressure sores. My assistants think they're improving, so we'll see what the doctors say. Hopefully by next week I can report an improvement in that area.
Monday, November 4, 2013
Entertainment
It's nearing the end of Monday, the best part of the day for me. The end of the day means I can do what I want without having a nurse in the same room with me and can be somewhat alone. However, my parents are in the next room, and I'm writing this for the world to see, not exactly all that private.
The entertainment industry does not get a lot of funding from me. I have absolutely no interest in sports, I can't remember the last time I was in a movie theater, and once I start a computer game, I tend to stick with it for a while. One example is a game called Starcraft, by Blizzard Entertainment. My best friend and I started playing it when we were in high school. Thirteen years later when Starcraft 2 came out, we were still playing it. We had both graduated from high school, gone through and graduated from college, started careers, and he had gotten married and lived in four different states. In late 2012 though, our interest shifted to a new game.
Farming Simulator 2013 is just what the name implies, a game that simulates farming. You plant and harvest crops, take care of livestock, buy and sell equipment, and watch your bank account grow, and shrink. In the eleven months I have had this game, I have easily spent nearly 1000 hours playing it. I do not see it lasting 14 years like Starcraft, but it is a good hiatus.
This past Saturday, the night nurse called in sick and a replacement could not be found. Therefore, I stayed awake by playing Farming Simulator and helped mom stay up. It's a game that can go as fast or as slow as you want, just change the speed of time with a key stroke. In fact, I have it running as I type this evening's entry. During the next two days though, I won't be farming, I have church activities for both nights. When Thursday night comes though, I'll be back to my crops again.
Living in rural Iowa, as the son of two people that grew up on farms, and having several family members in the farming industry, you get to know the job as a farmer well. I don't know that I would have been a farmer if I wasn't in the quad life, but it's possible. At least through the role of simulation, I can preteen what it's like for those around me.
Posting weekly is starting to become a habit, but I did almost forget tonight. We shall see what the next week's plans have in store.
The entertainment industry does not get a lot of funding from me. I have absolutely no interest in sports, I can't remember the last time I was in a movie theater, and once I start a computer game, I tend to stick with it for a while. One example is a game called Starcraft, by Blizzard Entertainment. My best friend and I started playing it when we were in high school. Thirteen years later when Starcraft 2 came out, we were still playing it. We had both graduated from high school, gone through and graduated from college, started careers, and he had gotten married and lived in four different states. In late 2012 though, our interest shifted to a new game.
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| Harvesting canola in Farming Simulator |
This past Saturday, the night nurse called in sick and a replacement could not be found. Therefore, I stayed awake by playing Farming Simulator and helped mom stay up. It's a game that can go as fast or as slow as you want, just change the speed of time with a key stroke. In fact, I have it running as I type this evening's entry. During the next two days though, I won't be farming, I have church activities for both nights. When Thursday night comes though, I'll be back to my crops again.
Living in rural Iowa, as the son of two people that grew up on farms, and having several family members in the farming industry, you get to know the job as a farmer well. I don't know that I would have been a farmer if I wasn't in the quad life, but it's possible. At least through the role of simulation, I can preteen what it's like for those around me.
Posting weekly is starting to become a habit, but I did almost forget tonight. We shall see what the next week's plans have in store.
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