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.

June 10  Monday  Colin wakes me at 6 am saying he is chilly. I turn off the fans, cover him with a light blanket and go back to bed. I am waking up at what I thought was almost 7. Colin calls me, I get up. I hear my husband exclaim that it is 8. I am way off! I quickly go in to check Colin and he is wet.  His muscle spasms always cause him to be on his side by morning. This morning he was on the catheter tube. With nowhere else to go, it comes out of his stoma. I get him his meds then change the bedding, wash him off. By now he is awake so I make coffee, get dressed. After coffee is his BMP, then ROM. He is out of bed by 11, I make him lunch. He has a friend come by to visit so I clean the kitchen, gather recycling, empty trash and FINALLY post an ad for care givers. It takes me awhile, I am not sure how to word it. Now we wait to see if anyone will respond. I go back to work in about 2 moths. We are running out of time, again.

June 11 Tuesday  He is awake when I give him 7 am meds.  We have coffee, listen to a podcast. I zap his hands, wrists and triceps while I do his legs ROM. Zap his abdomen and thighs/calves while I work on his hands. We finish by 10:30. He is in the chair by 11. I make him lunch, wash him up and we get ready to head to town. His OT appointment is at 2:30. We get there a little early and hang out waiting. Once in the gym his therapist brings some equipment. She fits him with a bent spoon, a plate that has a guard and he feeds himself some yogurt. He also picks up a couple small blocks. He is stronger on his left still, but was able to do it with both. Not bad! Then PT.  She stretches his arms, gets him on the mat table and he balances himself for about 5 minutes, twice. All in all he did well. Unfortunate it is only once each week and not as rigorous as the hospital, but at least they can help us move in a good direction.  Following PT we head home. I make dinner we all relax. I look over the applicants. 5 so far. I send out a response asking when they can come up to the house. I order a few ADL supplies, cups, plate guards, straws. He has a visitor so my husband and I go for a quick walk. His friend leaves at 9.  He is in bed by 9:30, sleeping by 10:30.

June 12  Wednesday  Again, he is up by 7, having coffee by 7:30. We take our time with his bath/BMP. We need to start thinking about the shower, it will be done soon. How will we do that? I guess I need a long brush, maybe a raincoat?  And what about the toilet? We have never done his BMP there. I think I will need to get a douchette or something similar.

We head to town after lunch. Neurology appointment is at 2:30 but he wants a shave first. We get him shaved, run by the bank, and make it to his appointment by 2:30. He has his muscles stimulated to check for activity. She sticks a needle into his muscle and zaps it looking for a response.  He has C7 level, some triceps. She tells us to keep doing what we are doing. It takes a long time, many years. He is pleased until she comes in with a B12 shot. After he traumatizes himself over a little shot wego to the grocery store.  We head home, I make dinner.  We chill for the evening, I get a couple more replies for a HCG and think about out how to reply.  He is falling asleep by 9:30 so I get him in bed. He is sleeping by 10.

June 13 Thursday  He is awake early again. This is the new norm. We have coffee, do EMS and ROM, get him up. After lunch we go outside for some vitamin D production. After about an hour we head in to do some PT. The gym itself will make his PT at home so much easier. My knees, hips and lower back ache every time I pull out the stander, set it up, get him in, move his legs for an hour. Put it all away, get out the mat table, get him on, stretch his back, he balances for 10 minutes, stretch his arms, put weights on, exercises, get him off, put mat table away. Now it is time to start dinner. He has a friend coming to stay the night. I make sure dinner is ready when she arrives. My husband is out with friends. Once dinner is finished I leave them to visit, go online and look at furniture, gym equipment, computers and reply to applicants. So much to deal with.

By 10:30 I am tired. Colin is still visiting, listening to music and chatting. I go in and get him in bed, changes, catheters switched, boots on and meds given with so much discretion even he was impressed.  I left her to give him his sleeping meds and turn off the TV. She is a competent young woman so I had no worries. I did wake in the middle of the night, covered him with a blanket, adjusted him. Otherwise they slept till 8:30. I was actually able to make some calls (the primary physician about his IVC filter and a letter I need for an insurance audit) as well as update the blog! I felt so productive. His friend hung out and had coffee with us until 10. We did his BMP, ROM then got him up. We went outside but didn’t last long in the heat.  Once inside he went on the mat table. He had another visiting friend so we had to finish up in time for me to make an exit. I was able to hang out with my husband, go for a walk before his friend left.  He was falling asleep again by 9:30 so I got him in bed. He slept while I got him ready, woke for his meds, then fell back to sleep.

June 14  Friday  We all oversleep. Colin calls me, my husband wakes and says it is after 8. We are now behind on his meds. I make coffee, get Colin his meds, turn on his music, help my husband make lunch. We do his BMP, zap him while I do ROM. We have lunch, hide in the shade outside for a bit, then back in for the stander. His legs are bothering him today so we just take it easy. He stands for 35 minutes then the mat table. My husband is going by his parents to bring home more enchiladas so I don’t have to cook. He also bought pulled pork after the blood drive at work so Colin gets to choose his dinner. We stream a movie, Colin has pulled pork. While the movie plays I make interview appointments for next week, make some final decisions about furniture and TV.  Colin is not comfortable again, his legs are burning. By 9:30 he asks to be put in bed, cringing as I move him, slide him in, get him changed and set up. Once I give him his meds, he begins to relax. I do not. I am tired and scared. Who are these strangers coming to our home? How so we protect ourselves? How well will someone take care of Colin? How much time will I need to donate so we have the care he needs? What if nobody works out? What schedule do I make? WTF am I supposed to do now?  My husband and I walk to the mailbox at 10:30. I have had some wine to relax but the questions won’t stop. I wish I had the answers. The uncertainty is overwhelming. Once we are back I have more wine, take a shower and pass out into oblivion until Colin wakes me for a blanket. Then the questions return, the stress keeps me awake.

June 15  Saturday  I get him his meds at 7, start a movie for him then go back to bed. I sleep till 8:15. We have a relaxing morning zapping his upper body while I do ROM on his legs. We talk about going to a movie, but he has friends coming by at some time today. After lunch (he has more pulled pork) we go outside, lasting about an hour.  We return inside, get him on the mat table, stretch his arms and back, practice his balance. Around 6 he has some friends coming over. One brings his father, whom Colin has know since he was in kindergarten, and has also suffered a SCI.  A diving accident, same level as Colin. This man can now make a fist, walks with a definite limp and has other limitations. He is not, however, wheelchair bound.  My husband and I hang out together while Colin has visitors. We have wine and some snacks, sitting outside under the new carport. His friends visit for about 90 minutes. My husband and I listen to the new Queen’s of the Stone Age and chat. We go in and make dinner, leftover enchiladas. So nice not to cook. We stream a movie, rest and Colin is in bed by 10:30. Father’s Day tomorrow and a BBQ in town.  We rest well, I cover him around 3:30 am then sleep till 7:30.