Fall Illness has Begun

I am very blessed in that I rarely get sick. As temps get colder, illness usually increases and we head into cold and flu season. This week, I felt fine as I usually do. However, I can't say the same for my caregivers.

Last week Sunday, mom received a message from my night nurse that he was sick and would not be able to come. We hoped my other night nurse could cover, but we never heard from my agency. Therefore, it was another long night with short sleep for everyone. Monday night was covered, but Tuesday and Wednesday nights also went without help.

In addition to nights, days also had trouble with missing help. My caregiver for Thursday and Friday was also ill and unable to come. Therefore, Sunday through Friday had five shifts open out of a total of nine. Thankfully, my night nurse who was on extended medical leave is back and doing well.

Since we didn't have help Wednesday night, that meant mom and I would have slept in Thursday morning. However, dad was also very busy at work and had something that needed to get finished. Therefore, I got up a little earlier than usual, did a hurried morning routine, and I went to work with him. In our rush to get out the door, we even skipped my usual protein shake for breakfast. By the time we got to lunch, I was getting hungry.

I've been with dad at work a few times. As a commercial printing facility, it's interesting watching folded papers get stacked, stapled, and trimmed to form an information booklet. I try to watch, but stay out of the way as well. For several minutes, I parked by the one nearby window and let the sun warm my face. It felt good, but I was also next to a machine's noisy blower. I battled for a while, good feeling sun vs. noise, but eventually my ringing ears won and I relocated.

Friday and Saturday were very nice days for mid-November in Iowa. Mostly sunny with highs near, and above, 70 was a treat. The two days were spent juggling witch parent stayed with me while the three of us tried to complete our various tasks. Unfortunately, the yard work dad did Friday was hardly noticeable Saturday as leaves kept dropping from trees.

These weeks are the more challenging times in the quad life. We all missed items we had hoped to do, but also made accomplishments. My trach button still feels very plugged at the end as well. The schedule meant my medicine was applied at odd times, but I doubt that would make much difference. I'm looking forward to this new week and hope it will be back to a more regular schedule.

Closing Wrong Hole

When you use unique medical equipment, you should expect odd things to happen. I used a regular trach for 30 years. In 2015, I switched to a trach button and have primarily used it since. Now, I am the only living person I know that uses such a device.

The button consists of two parts, an outer cannula that stays in place and a closure plug that inserts into it. In order to suction, the plug is removed and then the cannula keeps everything open. On Monday, my caregiver went to clear out my lungs and removed the plug. However, I couldn't tell it was out.

Normally, with the plug out, I'm unable to talk due to an open hole in my neck. Since I didn't notice the plug was out and could talk normally, that meant something was blocking the end of the cannula. Suctioning wasn't a problem, but  The same thing happened Wednesday and Thursday. Therefore, I called my ENT and they were able to work me in Friday.

After explaining the situation to doctor, he put the familiar scope through the button to see the end had grown over with granulation tissue. With my pesky persistent pressure sore problems, I take a couple meds to promote skin granulation. They don't seem to help my ulcer, but apparently granulation happened at the end of my trach cannula instead.

I was halfway expecting him to say I needed surgery to clear out the area. It may still be a possibility, but for now, I'm using medicine instead. Three times a day, for the next two weeks, we have to put three drops of a steroid inside the cannula. The hope is that this will clear out the blockage and restore regular function.

As I write this on Saturday, I have had three treatments. Just this morning, I noticed a little air escaping when the closure plug was removed. That means a small opening has already developed and the medicine is starting to work. That's great news, and I hope it continues. When I start feeling the drops go directly in my lungs, I guess it will be cleared. No matter what though, my doctor said to continue the full coarse of treatment. I'm scheduled to preach next Sunday, so it could be interesting if my lungs don't like the drops.

Living the quad life definitely runs into unique situations. I'm thankful God has given us medicine to help with problems in this fallen world. In some ways, I can also learn from the situation and help someone else if they also look at a trach button. Hopefully no unexpected doctor's visits this week, but I never know what tomorrow will bring.

Making Progress in a Busy Week

The last week of October was full, with something scheduled every day except one. With the week complete, my trips to Des Moines should be done for the year. I would like to say I accomplished a lot, but I don't have much to show.

Sunday was a great time back in church after nearly three months away. We had two baptisms done in a different style than I've seen before, but was thankful to see in person. Next week's entry may have more thoughts on this.

After a scheduled phone conversation Monday, Tuesday was a full day in Des Moines. After ordering my new wheelchair in late May, it was finally time to pick it up, at least that was the plan. My caregiver Sara and I arrived about 9:30 in the morning and didn't leave until after 2:00.

I sat in my new chair for most of the day as the technician adjusted various points to get them just as I needed. While he worked, another technician worked on the electronics and getting them set to how I wanted and could use everything without outside help.

Unfortunately, we ran out of time to get all the changes complete. We planned to bring the chair to my house Wednesday to finish, but I received a call that still more time was needed. At one point in the day, I was told this was the most complex chair they had ever worked with. I have seen setups somewhat like mine before, but I guess not done by this company in Iowa. Much progress was made, but I don't know when setup will complete and I can start using my new wheels. Whenever I do, that will be a long entry to cover changes.

Wednesday was my "day off" from appointments and I could get caught up on web work I was doing in the evening. Thursday, I was again off to the city. What was originally going to be just a visit with my dermatologist, also turned into equipment exchange. The doctor thought my skin was doing well, but my continuing pressure wound doesn't heal, or get worse. He keeps trying different treatment and I change positions frequently, but it refuses to fully close.

After the doctor, Sara and I found the place where I order my equipment, but never visited. An hour after arriving, we finally exchanged my pulse/oxygen monitor that I use all night every night. The loaner turns on and shows my stats, unlike its faulty replacement.

Friday was another day at home, but consisted of web related work and video training a client on how to make their own updates.

I am very thankful to be able to live an active quad life, but also like breaks. I'm scheduled to preach once in November, but that is my only planned excursion out of town. I have projects in mind as I transition to winter hibernation, but I'll wait and see if I have time, and energy, for them