August 13  Tuesday  A arrives at 8, Colin is awake. He has been since 4:00 when I put a show on for him to watch. The first weekday morning in his room. The contractor is there finishing up things waiting for the final inspection. The presence of people around interfere with his BMP. He cannot relax enough to move his bowels. I help A then let her do his ROM, help get him dressed.

The inspection is done, a couple minor things to do. I pay the final amount and the house is almost officially done.  The last sign off will be tomorrow.  We fix his lunch so he is ready for PT. D arrives at 1, Colin shows off his TV, plans his party for this Saturday. I have no idea how many people are showing up. I am trying to find an orthopedist still. Surgeons won’t see him, others only specialize in certain joints. When I mention SCI, the interrupt me to emphasize they are not a spinal cord center. When I try to explain I want them to monitor his BONES, they say the doctor won’t. I called the insurance for numbers, hung up empty handed.  I made an appointment with is new primary care doctor for discuss his sleeping problem and see if she can help us find someone, somewhere who can monitor his HO and osteoporosis.

They head to PT I try to get things done around the house. The more I do, the more I realize I have done so very little. Nothing looks better. I give up. Around 4:30 I get a call from the vascular surgeon who initially put in his IVC filter. She said he needed to order some device he would need to remove it. We make a “consultation” appointment (again) at 1 pm on Sept 19th. Then he will go over the procedure he needs to do. I am not sure it is just the cath lab, it sounded like a more serious surgery, but we will have to see on the 19th. I need to get class coverage and school has not even started. Figures. I try to hie in my book, while reading I start to stress about work, open some wine and try to relax.

Colin brings home Indian food for dinner. We eat, chill watching his new TV. He is in bed by 10:30. We are trying his old sleeping meds, an old prescription he didn’t finish. Hopefully he will be able to stay asleep instead of being up at 4:30.

August 14  Wednesday  He slept through the night! But today is a busy day. Colin is awake by 7:30. The network people show up to mount his TV, put in the ceiling speakers. He is excited. The TV goes up, it looks amazing. We don;t have a receiver so I order one for Colin, pay the $12 for delivery the next day. They must return on Friday, some of the speakers are broken. But he has a great TV today. A arrived at 8, we tried a BMP but he was not relaxed enough. While A does his ROM I take a shower. I leave just before D arrives. I make it to the school at 1 pm. I have not set foot on campus, let alone my classroom, since last September. It is not my classroom any loner. Everything is changed. Computers I had set up are stashed behind the white board. The sub moved her station to the back, put up paper and curtains to his my posters and pictures. All of my materials were in boxes in my office, her  materials were left everywhere. I had a lot of work to do. I sorted, stashed, moved, set up, tore down had minor and major tantrums over the next few hours. When the AC went off, I left. I made it home to find Colin having a BMP after having “shit myself” in the stander. I helped clean him up, calm him down, get him dressed. D got him up while I made dinner. D’s shift was over so I fed Colin. We put stupid movies on to see the effects on a big screen TV. From action to horror, we would watch for a few minutes then find something else.

He was getting tired by 9:30. I got him in bed, settled in and sleeping by 10:30.

August 15  Thursday  He sleeps till 9. A arrives at 8 and starts talking about her car, her other job. She said she sent me an email, but I have not been on my email account in days. We talk about adjusting the schedule so she and D have a double shift and days off. I tell her they can work out whatever schedule makes them happy as long as I have M-F covered for school. We discuss it some more, call D to see if he can cover her tomorrow. He cannot. I say I will. A and I try the shower chair for his BMP, without success. While he is in the bathroom we get a knock on the door. It is an animal control officer. He asks if we have dogs. I say yes, 5 of them. He says they have gotten complaints about some labs running loose all over, killing kittens and chickens, harassing people. I ask him when this happens, he says they have gotten several complaints. I ask again, what time of the day explaining we are always home and our dogs are always around. He said the complaints gave our address. Our dogs are LAZY. They did not even get up to bark at a strange truck. He says if he found the dogs he would impound them. He also went as far as to say they had to be on a leash on our property. I told him that did not seem right. He told me it was true, to look it up. I did, he was wrong. Now we have neighbors lying about our dogs. WTF kind of hater do you have to be. Their lives must totally suck. Now we have to figure out  some way to fence the property. Fuck!

A gives him a shower, does his ROM while I print our calendars, bell schedules and school calendar. I am ready to go, finally, when D arrives. He brings in Colin;s new receiver. I leave for school intending to get a class roster printed, my syllabus run off, test the projector and get rid of a bunch of stuff. I succeed. I get a pizza on the way home. D had worked out a schedule he felt would help everyone out. I told him I would email it to A. D feeds Colin while I go research fencing. I never get that far. I finally opened A’s email. It was her 2 week notice. She was not willing to continue the job. She lasted 9 days. I told Colin and D. They had me call her, text her and email her with a possible alternative schedule. She would only come up 3 days each week for 10 hours. That would give her the same hours each month with less travel, D would work 3 days and I would cover the last one. By the time we went to bed, she had not responded. If this does notwork, I am down to 1 caregiver then it is truly a FML situation.

I get Colin in bed by 10. He has a movie on when I get to bed. He calls around 12:30 after a big spam contorts him to discomfort. I readjust him, cover him then head back to bed for a sleepless night. Stress is such a downer.

August 16  Friday  My morning to cover for A. I give Colin his meds at 7, he goes back to sleep. I update the blog and have coffee. My husband and I discuss how to go about getting the fencing done. I make some calls. I get Colin up by 9 to start his BMP.  By 10 A has texted that she would gamble to work 23 10 hour days. D agrees. By non we have a new schedule that will go into effect on Sunday.

D arrives by 1, I head to the classroom. By 4 my time is up. I need to meet Colin and D at Costco. Colin is having a small party tomorrow to show off the new “pad”. he stocks up on food to grill, sodas, beer. spirits and snacks. I get home with everything around 8, unload.

We discuss how he wants things set up, get him in bed by 11. He does not sleep well again.

August 17  Saturday  He is awake too early after sleeping poorly but stressed about his party. D is due at 2 with ice so my husband and I clean up after I have Colin in his chair. D calls that he will be ab bit late, his guests begin to arrive by 2:30. My husband and I make our exit and allow them to enjoy the afternoon.D makes it by 3 with the ice. Manhattans, sausages, burgers, salad, loud music and laughter lasted until 9:30. He was tipsy, happy while I got him in bed. He was falling asleep by 10:30. He had a good time, his friends were amazed at his room. He slept well.

August 18 Sunday  He tried to sleep in but hand a headache. He had a little coffee and an aspirin with his meds then went back to sleep until almost 10. A was on duty, I helped with a few things but otherwise I spent time getting ready to take on a bunch of teenagers for 9 months. Colin was up by 11, had lunch, relaxed outside. I trained A a bit on the mat table but Colin was not feeling great so he didn’t do too much. We still are not able to use the van often so Colin was not happy about being stuck at home. A’s shift is always 9 to 7 on Sundays. She is a cleaning machine. I could not get her to take a break. We moved the extra refrigerator from outside to the laundry room. She washed the outside of that, the washing machine, walls, Colin’s bathroom AGAIN, the floors that were just cleaned yesterday and just about everything else we allowed her access to. We need to make some rules about cleaning.

Colin spent some time outside, listened to music. By the time A left he was ready for dinner, we streamed some shows. I had him in bed by 9:30. I had to be at school by 7:30 tomorrow so needed to get to sleep early. Even getting him in bed early, I still was not able to get to bed before 11. Tomorrow I return to teaching after a year out, a room depleted of supplies, a new curriculum from the State.  I am not prepared at all.

It is getting more difficult to summarize by day. There is so much to do now I have almost no time. I am not prepared to return to work.

On July 30 Colin turned 24. He went to town with D and had lunch with a friend. I prepared a dinner he requested and made him a white cake with chocolate frosting and sprinkles. He and I celebrated with beer and wine. We stayed up late. He was falling asleep by 11.

He had friends come by the 31st, therapy the 2nd. He and D are getting along well. Colin is comfortable with the way he handles him. D gets him in the stander, puts him on the mat table, takes him to appointments and therapies. D was there on the 3rd which allowed my husband and I to get a bunch of supplies in town. On the 4th I tried his BMP over the toilet for the first time. It was a disaster, as everything we do the first time is. He did not have a good BM, he was uncomfortable. It may be something we transition to over time.

The construction was at a standstill. The only worker assigned injured his ankle and was bed ridden. Nothing was done during the week. We were hoping to have it completed by now. I return to work the 14th of this month. I am running out of time to get things in order.

The 5th, Monday, his new cg started. A arrived a little early but she has a great attitude. Colin likes her. She will be getting him up, do his BMP, get him in the shower (when it is ready), dressed, fed and ready to go to therapy. Monday Colin decided he needed to go to town, have a drink, eat a burger, go buy beer and come home. D took him. I stayed home organizing so we could have a quick transition when things were done. Tuesday he had PT, Wednesday I took the van in for an oil change while D did his PT at home.  I was told the van needed new brakes (shoes and drums) at a mere $350.00. I need to make an appointment for that soon. Thursday he had his neurology appointment. I continued my mission to find an orthopedist. I could only get surgeons from the insurance provider list. Not a single one was willing to take Colin as a patient. Even after I explained his HO and osteoporosis, the still told me how orthopedists don’t do spinal patients. I ran out of time, accomplished nothing.

Friday A did her regular shift from 8 am to 1 pm. I took Colin to OT. The van was not feeling right and after being more observant realized it was not lifting anymore plus air was blowing out the rear tire area. The air sleeve was ruptured. We were now driving a low rider mini van with no suspension. FML. I let Colin know we could not use the van except for therapies.  He was not happy. The construction was done in his room, the shower and laundry room. Inspection on Monday, we could move him into his room this weekend. Finally, just before I go back to work.

Friday night D arrived at 6, bringing Colin’s dinner with him.  My husband got home at 6:30, got back in the car so we could go out for a late night. The first time in almost a year. We went to a local bar to see a local band as well as a band playing at Outside Lands on Sunday. It was fun, the music was great, we drank and listen to live bands. What a great date night. We got home around 2 am, D was right by Colin’s side.

I woke at 7 on Saturday, the 10th. Colin was still asleep so I went back to bed until he called me. We got him through his morning routine then in the chair. Saturday we moved the bathroom, all his clothes. I washed the tile floor, put down some rugs. We got the shower pan prepared with wax so we could use it on Sunday.  Saturday evening we relaxed, prepared for the final move on Sunday.

Sunday the 11th A arrived at 9. After his BMP, in bed, we got him in the shower chair and gave him a shower. His first one since the day of his accident. He enjoyed it. It took both of us working together but we scrubbed him head to toe. He enjoyed the warm water, being clean all over and feeling “like a person” again. After his shower A did his ROM, got him dressed and in the chair. They went outside while my husband and I moved him into his new room. He would no longer sleep in the dining room. We finished setting up his space. I got him in the stander. We made a nice dinner, relaxed in his new space. We still had the TV to mount, speakers, surveillance camera, desks and a couch to take care of, but at least he has his own bathroom, bedroom and living space. Soon the gym will be ready and he can work out easily.

I got him into bed at 10:30, had him ready to sleep by 11. Walking through the empty dining room reminded me of how it looked before he came home from the hospital. Now though, the rug was stained, the cobwebs were thick on the acoustic ceiling. It was cleaned top to bottom before he came back. Now it looked as if we had abandoned it for months. Soon we would have it back to it’s old dining way.

Monday the 12th I called the wheelchair mobility service and got an afternoon appointment.  A was her amazing self taking care of him. She even stayed a little late to help get him comfortable for a visit from a friend. D was picking his friend up so she could hang out, then take her home at the end of his shift. I took the van in, was told both sleeves needed to be replaced, it would be $500 for the inspection and parts, then another $400 labor. It would be a week before the parts came in and then we would make an appointment to get the system fixed. The fucking van has as many appointments now as Colin. I don’t know how we are going to get this done, keep his appointments, while I am at work. Somehow we are going to have to do something.

Right now, almost a year after his accident, we have 2 amazing caregivers. He has his own personal space to feel he has privacy, some independence as well as removing the sense he is invading the space in the house. His space is part of it, his part.The rest of my house is in complete disorder, but his room is finished.  The yard has the contents of the garage, more cardboard than I knew was possible to have, plus cords of un-split oak rounds waiting to be the next inferno. Maybe a year from now we will have our yard back. But I return to work day after tomorrow.  As with every other transition, with time we will get better. It is going to be a cluster fuck at the start.