June 16  Sunday  Father’s Day. Colin sleeps in till about 8.  I leave a message for my dad and start our routine. He has a BMP this morning, then ROM. I have him up by 11 so he can talk to his father. I get a chance to talk to my Step father, too briefly. Every time I talk to him I expect my mom to get on. I know she is not there, but I still want her to be. We head to my in laws for a BBQ. They have misters set up so we all stay cool. My husband is tired so we don’t stay too late. Once we are home Colin is having pains in his legs again. He is uncomfortable, moaning. There is little I can do beyond rubbing his legs, raising his feet. He is falling asleep by 9. I have him in bed by 9:30. It will be a busy week so I encourage him to rest. He drifts in and out, jerking awake looking confused. I calm him down, give him his meds, help him relax and fall asleep again. He wakes me around 3 to cover him. The sleeps till 7.

June 17 Monday  Our only day this week with no appointments. We take our time with his ROM. He is up by 11, on Facebook. I clean the kitchen, make lunch then we go outside. I finished a book and have begun another, The Wool. A Sci Fi my husband got for me. He listens to music, I read. After about 90 minutes we return inside. He gets in the stander for an hour, then we get on the mat table. He balances for 10 minutes. We stretch his back, his arms and legs.  I get him back on his chair. After I start dinner I go back in the room to find that he is staring intently at his hands. I ask if he is in pain. He says no, he is moving his finger. Sure enough he can voluntarily twitch his left index finger. I am so proud of him. He has never given up, never stopped believing in what his body can do. It is so fucking  awesome!  We chat about moving down the spinal levels, reteaching his mind where his body is. He is happy. His friend comes by, we have dinner. His friend leaves around 8:30, Colin is falling asleep soon after. I get him into bed, comfortable, medicated and sleeping by 10. He wakes me again about 3 am to be covered. He sleeps until 6, then cannot get untangled from the blanket.

June 18  Tuesday  He is awake when I go in at 7 am. He complains he cannot sleep late anymore, speculates it is the light. We do his ROM, talk about going to town early. It does not happen.After lunch, his clean up we get to his therapy about 20 minutes early. We get to his OT session. He feeds himself some finger foods. She fits him with a right wrist support and wants him to practice eating with his right hand. She has him pick up some small objects. We talked about exercises, adaptive equipment.Then it was PT time. Today there was an aide. He was good,  but he just did stretches, a bit of resistance as well as a tiny bit of mat table work. We left feeling as of we did more for his body than they did. We get home, I make dinner. Colin and I talk about taking responsibility of his care. It is up to us. No doctor or nurse or therapist or aide has the chance to make him a concern. They are all saturated, over worked. Colin is forgotten to them. While he streams a show I order some furniture and research “EMS fior the butt”. I find the flex mini. I have been looking for something to use to mimic fidgeting. This coincides with a study done for underwear that stimulates the butt muscles. This would eliminate pressure sores. The only electrode underwear is available from Korea. But the butt flex could serve the same purpose.

June 19  Wednesday  Our first home care interviews are today. He is having coffee by 7:30. We do his ROM and have him in the chair by 11. After lunch we go outside. The questionnaire each applicant must fill out is ready, a chair and cushion also. We wait. No word from the first. No show. And the second.  The third shows up a bit late, but we don’t care. SOMEONE showed up.  The interview was good, she is qualified and trained, DOJ checked and needs the work. Colin is impressed with her. After the final interview he rests. I zap his arms, charge his phone. We have dinner, he is falling asleep by 9. again, The same scenario. He is sleeping, around 9:30. I get him in bed. He rouses awake for a few minutes. Over the next 20 he sleeps. While I remove his clothes, change his catheter, put on his wraps and boots. Once his mattress is adjusted to the correct pressure I must wake him. He is, again, confused, uncertain, scared when I do. I calm him, give him his nightly meds, help him relax. He is sleeping withing 5 minutes. I close curtains, set the TV timer and head to bed myself.

June 20  Thursday  He wakes early again, having coffee by 7:30. We do his BMP, ROM, get him up. After lunch we head to town for the Urology appointment, finally. We get into a packed waiting room, with no space for his chair. He waits outside while I stand waiting for them to call me. After about 15 minutes I am told we are in the wrong office, we have to go get an x ray first. The next office over. Now we are late for our appointment. Their biggest concern is the paperwork. Always the paperwork. We make our way to the other office, a smaller waiting room just as crowded. He waits outside again.  It is 1:50. Four people come in asking which office they are supposed to be in. They seem to have trouble communicating office suite numbers when making appointments. By 2:30, after everyone who came in after us had gone in I told him there was room. He came in. 5 more people arrived. 3 of them went in. Colin needed to do a pressure so he went outside. As soon as his chair was reclined he was called. I let the tech know he was outside but she looked at me with the eyes only medical staff seem to have. They glare at you saying :”Why aren’t you ready the instant I call, with everything we want despite waiting beyond a reasonable time and being given the most inadequate information possible. You are such an inconvenience to me.” Fuck her.

Colin gets inside and we get to the X ray room. Small, too much shit around. The table is a good 4 inches taller than his chair. The chair has to go so close to the table it is like a 60 degree angle to move him up. No way I can do this. The tech calls some big dude who helps me pull him up. I leave the room. 5 seconds later she is done.We wait for 3 minutes for her to check the film. Then the big dude helps me get him back into his chair. She then leads us through the building and out into the first waiting room we had come in to more crowded than earlier.  We go wait outside. Sure enough, as soon as he is in a full pressure relief the nurse comes out. The same look as she waits for him to come in. She asks some questions, we hear her tell the doctor the information. The doctor comes in about 10 minutes later. He looks at the stones we brought in for a second and tells us they are from the catheter. He disapproves of the supra pubic. He says where he studied. “at Stanford” they preferred to have no tubes in the body.  He recommended flushing his catheter daily to prevent deposits that could turn into stones, showed me how to do it. We asked what alternatives there were to his type of catheter. He told us about the condom catheters, which we knew about. He added that the problem there was insufficient emptying. which leads to infections and stones. To deal with that they cut the sphincter muscles. Colin and I glance at each other. We both have the same thought, that is the worst alternative. Muscle cutting is far more abnormal and permanent than a tube in his body. He has had so many in the past and now only scars remain where they were. He says he didn’t see any kidney stones but wants to have Colin back in about 4 months for another x ray to check. It takes another 35 minutes to get a follow up appointment and get out of there. We arrived at 1:40, 5 minutes before our scheduled time. We leave at 4.

We get home, I make dinner. After dinner we talk a bit about the interviews for tomorrow. Hopefully someone will show up. By 9 he is falling asleep. He wakes briefly while I slide him into bed, then sleeps while I get him ready. I have to wake him to take his meds, then he falls asleep immediately after. Around 1:30 he calls me. He is wet, he has chills and a headache. I change the bed, washed him, checked his catheter. It was draining fine, the color good, no sediments. Things were good with his catheter and urinary tract until we went to the Urologist. WTF.