May 13  Monday  Another hot day.  I close up the house by 6:30, get him his meds by 7.  I really must clear the wall areas where data ports are going throughout the house. I manage to get 2 rooms ready. 4 more to go.

We take our time through his exercises. I zap under his forearm, the muscles we are working on now. He gets on his computer while I clear some more walls.

He gets on the stander, lasts 45 minutes, then we do his foot vibrator. He has me change the setting so he can tell the difference in feeling.

I order some big wall charts. One of the muscle system the other the nervous system. We had been talking about visualization and he felt those would be good things to have on the walls. I use the tuning fork in his hands and knees so he can isolate what he can and cannot sense.

We venture out into the shade of the trees. His friend comes by to hang out with him again and I take the opportunity to discuss the data wiring he and his father will be doing. They will be here to do the work on Wednesday. I better get the remaining walls cleared, plus a closet. Not enough time in a day.

I also have to call and confirm a doctor appointment, find out how to get his trach and IVC filter out now that the tests were 6 weeks ago. I need to identify a funding source for his door openers, find out how to change his SSI benefits, get the van paperwork finished, schedule the van for service, fill out more paperwork for the state (because a fucking book isn’t enough) and still find caregivers who are IHSS registered with SCI experience and a willingness to commute to work on a minimal gas stipend. FML.

Once my husband gets home we make dinner. After his friend is gone we get him in bed and I tune fork his feet. I am using the acupressure points on his feet and legs, other places I just put it on the see if he can sense the vibrations. He wants to look at his feet now when I get him in bed, his TED hose off. I spend a few minutes lifting each leg allowing him to inspect his feet, pat his thigh, evaluate himself. After his inspection I get him settled. Leg wraps, boots, pillows placed so his knees don;t hit each other when they spasm, pillow under the hip opposite his catheter side, sheet, blanket, arms placed over the sheet, under the blanket with a hand poking out. He calls it the flap, so I flap him every night.

I forget to do everything I am supposed to have taken care of. It all becomes part of tomorrows list. I get him his meds, start streaming something he will watch for 40 minutes or so, set the timers, give him a kiss goodnight, turn out the lights. It is the usual 10:30.

May 14  Tuesday  He gets his 7 am meds on time, then sleeps till 8:30. We do his ROM, them his BMP. He is up by 11:30, eating lunch. I have already called the doctor’s office to confirm the appointment, 2:15.  I wanted to get the blood work he needed for Monday’s appointment with the neurologist before his rehab doctor appointment today but it will have to be after.  It is a little cooler today, but still warm in town.

We make it to the rehab office, get in. He writes the orders for outpatient PT and OT. I have to call and schedule appointments. He is pleased with Colin’s overall health. Once he hears we are still having trouble getting the pulmonary clinic to get around to removing his trach he gives us the number for the clinic and the name of the supervisor.

He writes another morphine prescription then wants Colin back in 7 weeks. We get out of the office and head up the street to the ;ab for his blood work.  All of the computers are down. Not getting any lab done there. We leave, I call the outpatient center and set up appointments. OT is Friday, PT won;t be till the 28th. In the meantime Colin searches the internet and finds another lab on our way out of town. We head over there.

The lab computer are just coming up when we arrive. There is only one phlebotomist so it takes too long. For someone who draws blood as a career, she sucked. She poked his arm, pushed the needle all over the place, then gave up after about 5 minutes. She then went into his hand and filled 7 vials. I swear his hand was shrinking. It too far longer than it should have, Colin was now feeling poorly and mad. We headed straight home.

I got him home, gave him some pain med for his arm, settled him in with his computer then went and made dinner. He relaxed through the evening, we watched the next GOT episode, my husband being thrilled, Colin and I becoming more disappointed as the characters and events digressed from the books. His bedtime routine went smoothly. Tomorrow no appointments or trip to town so the plan was to relax and get some physical therapy done at home.

May 15  Wednesday  Cooler today. He only sleeps till 8 since his friend and his dad arrive to do the networking through the house and addition. He has coffee, we do ROM, we work on the muscles in his lower arms. He is up by 11, on Facebook while I am making lunch and trying the Pulmonary Clinic. I finally get someone, explain we have been waiting 6 weeks for word to get his trach out. She says she will talk to the nurse and get back to me.

We have lunch, I put his feet on the vibrator, we work on his triceps. They are making progress, slowly, but definitely more than a week ago. The construction guys are gone by 1, the network guys by 2. Colin had his feet massaged then tuned with the fork. His arm still hurt from the lab draw, he complained about it often.

We go outside, enjoy the sunshine, then come back in. The Pulmonary clinic calls back. She is asking when the last time his trach was changed. I tell her I did it about a month ago. She asks if it was dine at the clinic, I tell her no, it was never changed at the clinic, he was only there once in February. She then asks if we want to bring him in to have his trach changed. I reiterate that we want it OUT. She finally understands, says she needs to speak with the nurse about removal and will get back to us.  WTF do these people ever listen?

He gets in the stander for an hour, then I make dinner. We have dinner, stream a show, hang out. His bed routine goes well again, his feet inspection taking a little longer tonight. He is all tucked by the usual 10:30. He gets me up a couple of time through the night for adjustments, but nothing that takes more than a minute or two.

May 16  Thursday  Cooler and breezy. He sleeps in till 8:30 after his morning meds. I do his ROM then his BMP.  He is up by 11:30. We have lunch, he gets on the computer while I clean up. We do his feet on the massager, go outside then he gets in the stander for 90 minutes.  The home care nurse comes by to drop off some extra catheters. The first thing she talks about is his trach. She is excited since he is apparently scheduled to have it out on Monday. We were not informed, she confirms it and now we have a date for his trach to be out. It is at 10:15 in the morning. We will struggle to make that time, but it is exciting.

She chats with us for a bit even though he is not her patient anymore. She wants to come back and see his room/gym when it is finished. She leaves, I start dinner. His friend comes by and they hang out til about 9. Colin is in bed by 10, lights out by 10:45.

May 17  Friday  Cold and overcast at home.  We have to get going early. I scheduled an oil change for the van at 11:30, then we have a 2:45 “registration” and 3 pm OT session. We try to drop off his morphine prescription. The pharmacy tech tells me they do not have the medication and she is not allowed to tell me when they will have more. She will not take the prescription  tells me to go to another pharmacy but they cannot tell anyone over the phone if the have the pills. It is because of the DEA she says. WTF. We don’t get the prescription filled.

We get the oil changed then go find someplace to have a leisurely lunch. We get to the outpatient rehab center at 2:30, get registered by 2:50 and are told he will have OT at 3:15. Why the fuck are we waiting for nearly half an hour?

The OT lady gets us after 3:15, takes us to the gym. She asks Colin what he expects out of therapy. He tells he he wants more use of his hands, adaptive tools for shaving, etc. He tells her what we do at home, she observes his chair and the adaptions we have for him to use the phone and computer. She says she feels like we are doing really well, she is not needed. Colin and I shared a look that says we are not impressed yet with this place, or her.  She fucks around with some stuff using his universal cuff but doesn’t really do much. She talks about some “condition” she can’t recall the name of where an SCI patient has functionality where they are “not supposed to”. That statement right there makes me realize NOBODY dealing with an SCI patient knows what they are talking about ever. They just think they do. She stretches his arms some, says he has good range and we can start working on his strength. She says he has a “tiny” bit of triceps, but she won’t worry about them. She wants to strengthen his biceps. We shared another look, this time “What the hell are we doing here?” She finishes up saying she will schedule some appointments with him, we can work on things at home (duh). The next appointment is June 11, then every Tues at 2:30 for 7 weeks. As we leave Colin is pretty much decided if she does not demonstrate some initiative and a shred of interest in doing something beyond what we do, he will not return 7 times. He thinks we wasted out time today. We talk about the 6th floor rehab center and conclude they were all so good, now we are not getting the same level of care or interest. We were spoiled.

We head home after getting gas. He has another friend stop by and hang out. He leaves around 9:30. I have Colin n bed, lights out by 11.His father is coming to visit tomorrow so we need to be up early.