Busy Quad Week

Most weeks, excluding my medical routines, I feel I do regular activities to other men. I work on whatever is needed for my job, study Scripture, and play some games for relaxation. This week though, has been mainly quad life activities.

The first four nights, Sunday through Wednesday, did not have a night nurse scheduled. Mom and I did the regular routine of staying up until 1:30 when dad took over. He finishes my cares around 2:00 and I

can sleep until around 7:45, if my body lets me. One or two nights is okay, but four gets hard. I had a couple afternoons I tried taking a nap for 30-45 minutes. If someone came into my room, they would maybe see a foot sticking out, but I am otherwise cocooned under pillows and sheets.

Monday, Brenda worked her regular shift and then another four hours Tuesday night so my parents could rest more. Unfortunately, that was her last regular shift with me. Brenda has finished her schooling in Iowa and now returned to her home in Arizona. When she started at age 19 in early 2022, I wasn't sure what we were getting into. However, she has been a blessing from God that my family has greatly benefited from. I'm thankful for the unique skills I was able to teach her and hope they will be useful in Brenda's future career. Now, I pray my remaining daytime caregivers will be able to cover all five days a week again.

Last Thursday, December 5, I made my regular monthly medication order. I had received a letter from insurance that rules had changed for one, but it sounded like it only needed an updated prescription. As with most things insurance related, that wasn't the case. Every day this week I had to call or email either my pharmacy, doctor's office, or insurance. First one thing was needed, then another, and at least once it looked like I could no longer get it. This Friday, I had a note from my doctor that insurance approved the medication and the pharmacy delivered it that day. Technically, I ran out of my month supply that day, but I've learned to accumulate a few extra with strategic order times.

I'm looking forward to a regular week coming up as we prepare for Christmas. I have also had trouble with a very stuffy nose and sore trach button the last few days, but I pray it clears up. Have a great final week before Christmas!

To Lift or Not Lift

Lately it seems like it's one thing after another that gives problems. This week, it was a device that has been working well for decades that decided to stop.

In 1994, a few months after moving into our new house, dad installed a lift on my bedroom ceiling. At that time, my nurses used it daily to get me in and and of bed for school. Now, my caregivers still use it every time I get up, just not as often. This past Monday, I went to get up to bike, but the lift's hook wouldn't go down to connect to the sling underneath me.

That night, dad looked at it and couldn't find obvious problems other than some green goo in the main control wire. He tried cleaning it out Monday and Tuesday evening, but couldn't get it completely clean. It was a mystery of where to look next or how to fix it.

Wednesday, my caregiver noticed a phone number on the machine. I figured it had been disconnected long ago, but it actually rang and a very helpful person from the lift company answered. He gave direction on other areas to look and emergency controls that none of us knew existed. That evening, I relayed my new lift knowledge to dad and, after some ingenuity, he was able to get it cleared out and working again. I got up on Friday and Saturday with some slight lift hiccups, but they were successful flights.

We often take things for granted, until they stop working. I've been thankful for the last three decades that I can get out of bed without relying solely on dad. My parents were able to take a few days away, and I figured I would be stuck in bed all week. I'm glad that wasn't the case and the problem was solved before they left.

Matthew 6:34 says to not worry about tomorrow as each day has enough trouble of its own. That has been the quad life this week, but I'm thankful to know God has every day, and minute, covered.

Mattress Matters

I spend most of my time in bed. It is where I can change positions easily and my computer is most accessible. Doing my medical cares are also easiest when laying down, so it's where I spend my time. Therefore, I use my air mattress a lot and depend on it being stable.

Unfortunately, the mattress I was using was around 10 years old and was sinking in whenever I sat. In January, I started working on a replacement. Not all air mattresses are made to be able to sit, and finding a provider turned out to be quite a challenge. In June, I was introduced to another equipment supplier that had mattress options I could use.

The next few months were spent on paperwork and several weeks of silence. The person I started working with left the company and nobody contacted me to follow-up. Finally, early this month, I received my new mattress and dad got it setup on my bed. After 11 months' of work, I was glad to be finished and looked forward to no leaks and sinking. However, the joy didn't last very long.

It has now been three weeks since I started using the new system and most of my caregivers, and I, don't like it. No matter what position I'm in, I sink in and am hard to reposition. When I sit, the mattress has a special "sit mode" that we are all having trouble remembering to turn on and off.

When dad investigated my old mattress, he found a hose with a hole when I was sitting. He swapped it around with another one and likely fixed the issue, within an hour. 

So far, I haven't heard of switching back to my old mattress. It's frustrating that the new one wasn't a better solution, but I guess I learned what not to get. Such is the quad life, but I'm thankful to have options to try and at least have a good backup if, or when, it's needed.