Thurs 1/24 Rose early to get the day going. It was raining, but not heavily.  I started the space heater then started waking Colin at 8. I washed his hair, face, brushed his teeth. He was dressed, fed and ready by 11. I packed his 2 pm meds and antibiotics, a container to drain his catheter bag, the list of his medications, sweaters, wipes and the In and Out gift certificate given by some good friends and the disabled person placard. I started to get him in the car at 11:30, was ready to leave by 11:55. The chair fits in the trunk, the back and cushion in the rear seat. The slide board, all belts accounted for. We were on the road by noon.

We had a 1 pm doctor appointment. I had made a list of all his medications. We had to go by the rehab doctor to pick up a prescription, take it to the pharmacy and wait. During the wait, we would go to In and Out.

We drove into the disabled parking slot. Damn if there isn;t enough room to get him in his chair without being in the way. Never occurred to me before. As I was moving him out I noticed his side was wet. There was stomach content on the seat. I had left his PEG tube open and the drive down had pushed some of his meal out. It had to be something I guess.

We made it to the doctor appointment on time, his primary physician.  I cleaned Colin up before we went in. He had not seen Colin since long before the accident. We spent a good deal of time with the doctor answering questions. He gave Colin a prescription for an inhaler to open his airways and loosen the mucous. It went well. We would go back and see him in 2 weeks.

We swung by the rehab doctor’s office then dropped the prescriptions off at the pharmacy. They told me an hour. We went to In and Out. He ordered a #2 with a coke and I ordered a chocolate shake. We shared the fries, I poured some coke down his PEG tube to clean it out. He ate all his cheeseburger.  I gave him his meds and IV in the parking lot then after an hour we went to the pharmacy. We had to wait another 30 minutes. WTF is wrong with these people. It’s 2 prescriptions and they act like it is 50. Fucking 90 minutes? Why didn;t they just say that to begin with?  They cost me another $40 and finally by 4 we were heading home.

Once home I reassembled the chair, got him on the slid board and slid him over.  His pants caught the edge and I didn’t have enough weight on the other edge to stop the board from sliding off the car seat. For the second time in 2 weeks, he was not on the board or chair. My phone was out of reach. Here were were in the fucking driveway, rain soaked mud and rocks at our feet. Colin is perched on the edge of the car and holding onto me patiently waiting for a plan to get him out of there. I tried to pull him onto the car seat, but am not strong enough. I told my self I was not going to put him on the muddy ground no matter what.

I stabilized him, made sure his feet and legs were in good positions. I stuck the slide board under his ass and put leverage on it to keep his butt off the edge of the car. I knew I would have to do a slide uphill, over the bump in the board, and up to the chair. I moved the chair out as far as I could to lessen the angle, but only by a few degrees. Otherwise I couldn’t reach the brakes. And then I heaved his ass up. It took 4 pulls and then 3 adjustments but he was finally in the chair. I was in tears, shaking. My chance of being an old lady with full continence is probably over and I am damn surprised I didn’t poop or start my period. Regardless, he was in the chair without being in the mud.

We got into the house I got him comfortable and unloaded the car. I start some dinner and give Colin meds at 6:45. I begin to feel the stiffness by 7:30.  He east a good dinner, chicken, cheese ravioli and broccoli. We have some ice cream. By 8:30 he is back in bed. We talk about how scary the car transfer was, how helpless he is to do anything. He was very patient during the whole situation even though I was struggling. He says we need a younger stronger care giver and I agree.

By the time I do his IV at 10:30 I can barely move. Every time I sit or kneel I feel the muscles from my neck, shoulders back and hips tightening up. Maybe it’s time for me to take some drugs. He is settled for the night by 11 and I finally waddle off to bed hoping I won’t feel this badly in the morning.

Fri 1/25 I remember how I used to look forward to Fridays. Now they are just another day instead of the end of a week. Colin called me once during the night to uncover him. Then I slept till the alarm went off. My husband was complaining about his back, thinking it was the mattress. Well damn! I love the mattress. Not only is it expensive, I feel good after sleeping on it. I felt ok this morning. But, if he is waking up with a stiff back, we’ll have to do something.

I am up at 6:15, done with his feeding and IV by 7. I turn on the space heater at 8 and put electrodes on his feet. By 8:30 I put on Pandora and he has coffee and toast. I get him washed and dressed.  I am doing ROM on his legs when his right hip pops loudly. I feel around and there is a lump on his inner hip. Is that the HO?  Did I do something to hurt him? I decided not to get him up so the PT coming at 1 today could check out his hip. We do his shoulder and neck exercises. While I  give Romey her morning antibiotic and get his 10 am meds ready Colin works on his arms. He is lifting his straightened arms up towards the ceiling, then holding them. He supports his wrists also as he does not have his braces on. He rotates his wrists. He does this until his arms are tired. We work on his hands. He is coughing and I take off his cap. He has used the inhaler a couple of times so he was able to bring up the big glob that has been giving him trouble. Once he does that, he breathes clearly for a couple of weeks. By 1 he is ready and the PT therapist arrives.

He does his initial assessment and checks out Colin’s hip. He says if I had done anything bad it would have been obvious. He says it was just something readjusting, his hip felt fine. While Colin worked with the PT I did dishes and got his 2 pm meds and IV ready. I answered questions and we showed the therapist the stander. He was very impressed. We let him know we had wedges as well as a mat table and cuff weight set coming. He was pleased to hear how eager Colin was to continue therapy.

Once PT was gone I gave him his IV and got him out of bed. We had lunch. He had a chicken sandwich and I had yogurt and a banana. We had juice and ice cream. He continued his arm exercises. The shelves my mom  bought for us arrive and then his weight set. Strap weights from 1 lb to 10.  The bigger weights we put on his abdomen to strengthen his diaphragm. He was up to 30 lbs in rehab. The smaller ones he uses to build his strength. I think he is up to 2 lbs.

We decide to watch a movie on Amazon. We have dinner. The streaming sucks. Stop and start was so bad. The middle 20 minutes turned in to 40 so we gave up. It was 9 and we had the BMP tonight. I got him back in bed.  He complained of a headache. This was bad. I took his BP, it was high at 145/98. This is the autonomic dysreflexia so my task was to find out what the problem was and fix it so his BP would come down. I found a little blood around his supra pubic catheter site. I cleaned it, changed the dressing. It did not appear clogged as he still had output. I took his BP several times till it was his normal 105/64.   I could relax a little now. We thought it was pushed against during pressure releif so I would do a different method to protect his site in the future.

Once his BMP was done and he was comfortable I fed him his 10 pm meds and IV at 10:45. We were off but not by much. We tried to finish the movie but the streaming was just as bad. I gave him his sleeping meds at 11:30 and settled him in for the night. He woke up around 4 to be uncovered. Sassy always sleeps with him, hogs the bed and makes him warm. He slept without incident the rest of the night.

The days are non stop with no breaks longer than 20 minutes. I am losing track of days going through the same routine.  I manage to keep up with dishes and laundry, but the rest of the house is a disaster.  My hands are cracking from so much washing even though I wear gloves. Every night my back is so tired I waddle to bed feeling 90 years old. The bed is not as high as I need it to be to stand. I keep it lowered and stay on my knees to save the back strain. When I do literally crank it up to full height, my hands throb from the stupid tiny handle the manual crank has. Flimsy thing is going to break. The only thing that sets days apart are events out of that regular pattern. Some are really great, others our worst nightmare.

Monday 1/21  My morning started at 6 with a feeding and IV. I then do dishes, start a fire and other putter shores that need to be done. Started his morning with Pandora around 8:30.  Range of motion on his legs, his right hip only bends to 90 degrees. I can feel the extra bone stop it. He is dressed , washed by his 10 am feeding. Next are his arm exercises. This morning we worked on triceps. Lying flat he can almost bring his left arm off his chest and down on the bed. He gets it nearly vertical. His right one he can bring up about 30 degrees. Both are a major improvement from a month ago. I massage his hands and fingers to reduce the swelling then he tries to move his fingers.

He is in the chair by 11:30. He is using thera band to exercise his arms. We still have not received the cuff weights or mat table so we improvise. A nurse comes to draw his blood and make sure we are doing ok. The pharmacy delivers more IV antibiotics. We go outside and I empty trash, break down boxes for recycling. Once inside he works on reaching while I take the trash up. We have a long dirt driveway so it takes about 10 minutes. He has been eating more so I decrease the liquid food but still give him meds through the PEG. I have weaned him off 2, working on 2 more. My goal is to have him on only the 4 required for his condition, spasms, neural pain and then for his HO. Ultimately get him off the morphine pain med and sleeping but those will take longer.  I make dinner, he has a small plate, eating it all He must have ice cream, even though we have talked about the mucous production. He eats half the pint. Won’t let him do that again.

It was a relaxing evening. He is back in bed around 8, we do his night routine. He is resting while I massage his hands some more. It is a good evening, everything works on schedule  so we are all in bed sleeping by 10:50.

Tuesday 1/22  After I fed Colin, gave him his IV I started some laundry, wrote out all his medications for his doctor appointment called the doctor office to refill his pain medications.

At 8:30 the nurse aide called asking of Colin wanted a bath. I told her sure. She said she would be there at 10. I started getting him up at 8:30, Pandora channel of his choice. I think it was Justin Martin. We finished all his ROM but she still had not shown up. She called, lost. She arrived near 11. After his bath I got him dressed and up in the chair for exercises. I called asking about PT and was told the therapist was still ill. We continued to improvise exercises, focusing on his triceps. We had lunch and did what we could with the isometric and thera bands.

Colin and I continued our routine. We had a good afternoon and by 4 he had a visitor. They listened to music, chatted,watched some show together. His friend stayed for dinner, Colin ate a whole (small) chicken burrito.

While they were visiting I went to feed the dogs. One of the pups (not really pups anymore, but the babies of the group) was lying by the canoe and would not get up. It was dusk, the light fading, but I noticed something on her upper back hind quarter. It wasn’t something, it was something missing  A huge chuck of flesh had been torn out. A gaping wound about the size of a garlic head , down to the bone, muscle gone. Damn. I left her there after reassuring her and got everyone’s food. She was up when I came back out and she ate all her food, a good sign. I kept her separated from Michele then told my husband when he got home. He checked her, we put a papasan cushion under her and made her comfortable. We could not do anything till morning.

His friend left and I got Colin back in bed. He was getting wheezy and congested but having trouble moving it out of his throat. It didn’t help to suction him as it was higher than his trach. We had to sit him up, let gravity draw it down, then have him cough it through the trach. Lengthy procedure. It left us off schedule but we were all in bed by 11. I heard him wheezing through the night via the baby monitor, which made for a restless sleep. Still had to get up at 6.

Wed 1/23  After I  fed Colin, gave him his IV I checked on Romey. She was at the fence to the pen looking sad that Michele was inside and she was not with her. The are litter mates and have never been separated. I check her butt, it is deep, to the bone, muscle gone. My husband will take her to the vet and if need be, Colin and I will pick her up. While Colin is resting and my husband is waiting for the vet to open, I run to the post office. My mom has sent some stuff. The 2 boxes are packed with wonderful useful items.  Briefs, washcloths, awesome pillows, sheets, t shirts, blankets, bed covers. It was like Christmas.

I started getting Colin up then helped my husband put Romey in the car. We were doing ROM on his legs when they came back. The tear was too big and deep to stitch. She got an antibiotic shot and now I have to give the dog antibiotics as well as Colin. Plus clean a gaping wound and put neosporin in it. My husband had gotten blood on his pants so he changed then went to work. He was expecting to be home late to make up the time.

Colin was having trouble breathing with his cap on. We spent much of the morning, then most of the day getting his secretions cleared. We discussed cutting back on the dairy products. We managed ROM and triceps. I spent the day putting electrodes all over. Feet, legs, arms, hands. His upper body contracts at 30%, he can feel the stimulation at 95% on his legs but not always on his feet.. He got zapped alot. We didn’t get him out of bed but did as much as we could between suctioning.

I received a letter from the insurance telling us the incontinence and bowel supplies were a convenience, not a medical necessity. I don;t understand that. He cannot use the toilet, he cannot support himself. He has no control over his muscles but pads, suppositories, diapers and gloves are all a convenience. WTF would be a necessity then?

Whatever, if medical won’t cover it, we will figure out something on our own. Hygiene is preventative medicine imo. Fuck the insurance.

Because he went in late, my husband worked to make up the time so wasn’t home till almost 8.  We watched a movie then ate some dinner. Colin was tired from all the coughing and suctioning. By his 10 pm feeding he was ready to sleep. I finished his antibiotic then gave him his sleeping meds. He was feeling depressed that he stayed in bed. I reminded him that not every day was going to be productive. He was still recovering. Look at how far he had come. Not long ago a day like today was the normal day, now it is the exception. We would take it one neuron at a time, one day at a time. Some days were just gonna be shit. He felt better then settled down. He slept well with minimal wheezing. Tomorrow was our first outing to town since his discharge. The first of many follow up doctor appointments. I plan on taking him to In and Out.