May 18  Saturday  He was up several times during the night. At 3 am his catheter had leaked.  I changed the linens and had him clean, dry then going back to sleep by 3:30. He woke again at 6 needing another blanket.  I started his BMP by 8:30 but he had some congestion I had to stop and help him remove. His allergies caused extra secretions. They tended to accumulate in the bottom of his lungs, where he has trouble inflating them. They get tick and it takes awhile for him to get them out. Today he had to struggle. We are not suctioning him anymore. The option will be gone as of Monday.

We finish clearing his lungs, complete the BMP just as his father arrives. We do his ROM, get him dressed, in the chair. They are going to go out for lunch, then maybe up to the mountains for a drive. I make sure they have meds then help them get all his stuff ready. They leave about 1pm.

My husband and I have not had the house to ourselves since last December. We take full advantage. By 4:30 they are back. My husband and I had a late lunch so make dinner early. Then we relax while Colin and his dad visit. I get him in bed by 10, leave the meds out for his dad to administer, get in bed. I still keep the monitor with me in case they need something but otherwise I don’t need to get up at all.

May 19   Sunday  His father leaves before Colin is up. I let him rest after the late night. I have him exercised, washed, dressed and in the chair by 2. We go outside for some sun. His friend comes by to hang out for a little bit and my husband and I enjoy some time outside. It’s a nice Sunday with no unexpected complications.

May 20  Monday.  I have him awake by 7:30 for his BMP. we need to be leaving the house by 9. After a quick ROM I have him in the chair and we are driving out by 9. The first time we have made an early time schedule.

His trach is to be removed today. Since we must go to the Pulmonary Clinic we expect about a 3 hour wait. We are prepared. After checking in we must wait in the hall, there is not enough room for a wheel chair, let alone a power chair. I get a call from his primary care doctor’s office. She was on vacation so is returning calls. I let her know we still need follow up in the IVC filter removal as well as the Urologist.  She says she will get on it and get back to me. Cool! At 10:30, a nurse comes out and calls us in. we are stunned. It’s only been 30 minutes. An intern is in the room within 5 minutes. Something is up.  He asks some questions then steps outside to discuss the removal with the Pulmonary doctor.  He asks a couple more questions, pulls out the trach and they look for a gauge pad to put over it. All the cabinets and drawers are locked. The docs do not have a key. Fortunately for them, I have spare and hand them over.  And finally we find out why things are going so well. Apparently the Pulmonary doc ran into his rehab doc who chastised him about not removing the trach sooner. Pulmonary doc asked why we did not tell his rehab doc we had an appointment. I told him we didn’t know until Thursday, after seeing his rehab doc on Tuesday. Regardless he said we only had to return if there was a problem then we were heading out the door by 11.  And  we had a ton of time to kill before his 3 pm Neurology appointment. Figures things go well and quickly when we least need them to.

We go have a long lunch, walk around, go get ice cream then make our way to the Neurologist. She began his neural mapping (she checks the electrical conduction through the nerves. It is “sporadic” due to his injury. We knew that already.)  Colin was feeling poorly and was not up for the muscle stimulation part of it.  The needles in his muscles was the ultimate deterrent. He promised he would be more prepared next time. She gives him a prescription for nerve pain medication and we make an appointment mid June.

We get home, He relaxes while streaming a show. I make dinner. After dinner he wants me to vibrate his feet on the massager. He is tired and is in bed by 9, lights out by 10.

May 21  Tuesday  I let him rest since we have no appointments. I give him a bath, change all the dressings do his exercises. He is in the chair on the computer while I make lunch. We go outside for awhile. I went in to get some water, noticed we had a message. It was his primary care doctor’s office. The prescription nurse left a message saying the doc had no idea who prescribed his sleeping medication, and Colin had to make an appointment to come discuss it with him before they would refill it. I was dumbstruck. The doctor is the one who wrote it, after we went in to see him about a change. What the fuck was going on? This doctor’s office had 3 of 12 prescriptions to keep track of (and he wasn’t using the other 2). I returned the call, told her that the office wrote it and they better fill it. I went back outside to vent in the sun. After I settled down we went back in to get in the stander. He was up for an hour, then I zapped his arms and vibrated his feet. We went back outside for awhile in the early evening. We came back in he did Facetime with a friend for about an hour. I made dinner. We ate, he streamed a show while I did some laundry. He was in bed by 9:30, ready to sleep by 10:30. We have had a nice routine now with no illnesses or distress. It is nice to take our time with his exercises, getting some time in for sunshine. He is using his adapters well for his phone and computer so I don;t need to be there to help. I actually have a clean kitchen every day. Sadly, it is the only daily chore I manage outside of his care. Now the old dailies have become when ever I get a chance.

May 22  Wednesday  We were able to take our time again today. He is waking around 8:30 so I have little time between when my husband leaves and his care begins. I used to be able to update the blog, now I am lucky if I can get a shower in. This morning he wanted to check out his trach wound in a mirror. I spent quite awhile holding the mirror so he could look at every angle in all light profiles possible.

We get through his ROM, his BMP, wash his hair then get him up. While he is on the computer I leave another message for his doctor regarding the sleeping medication. I also mentioned I wanted an explanation regarding why they can’t keep track of what they do. We go outside, it is rather chilly today, get some sun. Back inside and he is in the stander for the hour he has set for himself. I vibrate his feet, zap his arms and we talk about items for his room. By now it is 4:30 so there is no way the doctor’s office will call me back. Fuckers.

I make dinner. Colin is relaxing so my husband and I go for a quick walk. When we get back he is almost ready for bed. I use the tuning fork on his feet then he is ready for me to stop poking at him. I get him ready for bed, lights out by 10:30. It has been good for us staying at home. The pressure to meet appointment schedules is stressful. No matter how hard I plan, we are always barely making it. I like not rushing around.

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.