It was a long shitty summer. I still cringe as I recall those endless 3 months.

Colin’s muscle spasms had gotten worse. He still could not do any range, therapy or exercises with his arms because the spasticity was so violent. We went to his neurologist to ask about an MRI. They never set one up. Went to his rehab doctor who wrote him a prescription but didn’t tell us how to get one done with sedation. Finally by the end of the summer we were able to get his primary to submit the request for one.

Meanwhile we finally got a name for his condition when the pain wanna-be doctor (physician’s assistant who makes everyone call him doctor) yelled at Colin “It’s called clonus”. That was all we needed to research and see what we could determine.

We were on the right track eliminating secondary causes. His hip was ok. We were working on the MRI of his injury. The IVC filter was next if the MRI doesn’t show anything. We also took him off the Nucynta. He had been getting hives more often even after reducing the dosage. By summer’s end he still had bouts through the day but “good days” were creeping back in.

I had to teach summer school so we could replace the water heater. Tank less cost around $3K. One good CG went out on maternity leave and her replacement was not up to par. She had been on the evening shift, which is far easier than mornings. She refused to learn his BMP, would not get him in the shower, would not respond to questions for clarity or confirmation she understood. She took him to the doctor once and drove so poorly we refused to allow her to do it again.  I filled her shifts when I could with providers who would do the job. The she started to complain and finally she quit.

I had to take Colin to school with me. It was a nightmare. We had to get up at 4:30 am to get him dressed and in his chair, loaded in the van and at school by 8 am. He watched shows or played a game in the office while I checked on him regularly. We skipped his BMP and showers. I was exhausted by the end of school. It would have been ok except the quitter now was having some issue with her final time sheet.

I had told her to mail it, signed to us and we would take care of it. If she had done so, her final check would have been in her hands within 10 days. But she went to the county and told them something. They sent his caseworker up to the house to have him sign the time-sheet. He came once in the morning after being told specifically not mornings. He came again and we challenged the time-sheet she filled out. She put down time for a day she did not work and extra hours on a day she was late. We refused to sign and we showed supporting information that our records were correct. A month later she is challenging our time by 30 minutes. That’s barely $5. We let her have the extra cash.

By the time mi- July came we had another caregiver. A good one. He is still with us and is working out very well.

I trained for July and early August. Then back to work for a few days before we headed north for the big event, the solar eclipse. Just before we left some pressure sores opened on Colin’s bottom due to his catheter leaking too often. We were so worried about him traveling he stayed in bed on Thursday to give his butt a break. We had forgotten he needed to get his intrathecal pump filled on Thursday. We were leaving Friday and would be gone for 6 days. His pump would run dry by then. So while my husband and I packed, his buddy D took him to the doctor, got hi pump filled and brought him home. They were out and back by 10:30 am. We drove out at 11 and headed to Medford. We arrived 13+ hours later.

On the way out we hit some accident traffic. We stopped at the rest stop in Turlock for a meal and ran into his childhood buddy, which was nice and we had lunch with him. Then the AD started. His catheter was not draining. I tried to clear it and nothing. We stopped a couple more times trying to clear it and keep his AD under control. I only had 1 spare catheter and it was the first fucking day of a 6 day trip. We hit Sacramento at the height of Friday traffic which added a good hour to our trek. By the time we got to Red Bluff he and his chair were soaked and his catheter was not draining. This was not doing his skin any good. So by the waning daylight, with my husband’s help and Colin in his chair I changed his catheter. Non sterile conditions using mounds of paper towels and chux we stripped him below the waist, washed him off and put dry chux under his butt to protect his skin. It was dark by the time we finished. We continued on without incident until we arrived in Medford.

Once there we still had to haul him up an incline to slide him into bed, wash off his chair and him, check his bottom and reapply the bandages. We all finally got to sleep by 1:30.

We met my sister in Grants Pass Saturday morning, picked up my other sister north of that then met with our friends in Salem by early afternoon. We ordered pizza and relaxed .It had been hard to get up there but we had made it.

The weekend was relaxing with family. The eclipse was amazing. Colin ran into some former neighbors (parents of another childhood friend) who took incredible pictures with his awesome set up. We had some trials while there. Accidents, him feeling poorly, his bottom not healing well. But he was glad he went and I was happy to take him.

We made it back and returned to work. The remaining summer days were getting better with his new CG. We got the house painted, the spare room floor redone and the water heater replaced.  His medical plants were maturing well.

During the last week we had part of an old oak tree fall on the house. Good thing we painted. And sadly, on the last day of summer our nearly 16 year old cat passed after a series of strokes. We held her until she was gone and said goodbye. She is buried under the oak tree whose part fell on the house along with our other furry family members that had to leave us.

The summer is over and I am happy to have the fall here. We got to see an eclipse and our family, he had his MRI last week and he is taking less medication. Overall it ended well but it was a long, hot, exhausting summer.