March 16 Saturday  His father arrives around 10:30. Colin isn’t up yet but they hang out and I get him up after he has some pizza.  Once his father arrives I am able to start cleaning out the back rooms for construction.  My husband and a helper begin to put in the new stove. He goes on a walk with his dad taking the power chair up the dirt driveway and up the road. It’s a beautiful day. Once the kitchen tile is cut, everything is covered in tile dust. I air out the house and don’t let Colin in until the air clear. The last hour with his dad is  interrupted by sawing and hammering. After 5 his dad is gone I get Colin comfortable and give him the rest of the pizza for dinner. By 10 the stove is in but the breaker is bad. There was a break in the power wire on the old stove. It arced, blew out the stove and the breaker.  Had been there for over 20 years.  Fuck me.  My husband took the helper back to town and returned with the breaker. He and I replaced it in the dark and by 12:30 am on Sunday, we had a new stove.  Colin rested well, only getting me up twice for minor comfort adjustments.

March 17  Sunday  First morning using the new stove. Made a nice brunch and we relaxed all morning.  My husband had to run into work. Colin and I got him on his hand bicycle, stretched his hands, went outside. It was a nice Sunday. I baked a lasagna in the new oven, hovering over the digital controls in awe.  It was a good Sunday for the most part. Colin’s nerve pain is not being controlled as well by his nerve medication. By evening he is in agony as his legs feel like they are burning, with another 4 hours until the next dose. We need to talk to the nurse and see what options are available.  Despite his discomfort, he gets some exercises in, stays in the chair all day and rests well through the night.  He has not had a BM in a couple of days so tomorrow we resume the BMP. We both prefer that over diarrhea!

March 18  Monday.  At 7 he is doing well, sleeping while I give him his morning dose.I zap his calves.  I have him up by 8:30 and he is wet. His catheter leaked. I change his bedding. We do his BMP, I give him a bath.  By now he is grumpy and complains while I do his leg ROM and cries while I do his hands.  I have him up by 1, the nurse is there by 3:30. She says he looks really good, his lungs are clear. She talks about alternative nerve meds and we plan on discussing that with his doctor on Friday.  Since it is a nice day, I have all the curtains drawn that close off his area and she notices the stander. When she realizes he has one, it was a donation, she says it is her goal to get a PT therapist in here to get him in it. It will do his alignment, trunk strength, and bone health so much good for him to do standing therapy.  She says it is her mission as she leaves giving Colin a bill of good health, saying we are doing a good job and she will return on Thursday of the following week.  We do his hand bike, stretch his arms and I zap his triceps. Dinner is at 7, he is in bed by 9:30 then sleeping by 10:30. He only gets me up now once or twice  each night, adjusting his arms or getting him straight after slipping to the side a bit. We have a big day tomorrow, the contractors come to begin planning and will start this week.

March 19  Tuesday  Hair wash day. He gets grumpy with that as well.  I have him finished, all ROM done and in the chair by 1. I keep getting interrupted by the contractors asking questions so it takes longer.  They tell me the garage, the back office /store room must be cleared by Thursday when the work begins.  All the stuff to give away as well as Colin’s Honda need to be moved by the weekend. Well shit.  Fortunately for me, his friend shows up for a visit. This allows me to start clearing things out.  I work all afternoon and post things on Craigslist.   The back room has the loft we built and a freezer left, the garage a few more things plus a couch and love seat. When my husband gets home we have dinner and then begin to disassemble the loft.  By 9 pm, most of the items posted are gone. Only a couple little things are left plus cement pyramids. We have Wednesday to get everything else out.  The garage is almost empty.  Colin’s friend leaves and it is too late for a BPM so we put it off till morning. His legs are bothering him as usual. He is in bed by 10, tucked in by 11 and sleeping by 11:15.

March 20  Wednesday  Vernal equinox. Raining today. Not cold enough for a fire but chilly. I don;t get him up until it warms up, then we do exercises, stretches and his cycle. We are using a camera mouse software that was free online. He has page turner/keyboard tolls on his hands to help him type. The camera mouse tracks the computer mouse with a location on his face, but it tends to drift and we have to re adjust it. It does give him complete control over the computer so we will be looking at better options. Maybe a joystick with a big button since he cannot move his fingers. We practiced his “new” signature using a tool that holds a pen in his palm. He cannot grasp it, but he can make a notation on paper.  That is all we need to get his first SSI check in the bank tomorrow.  I posted the cement pyramids on CL and by 11 they were gone as well. I like that items we don’t need can be reused. Waste is so bad.

We do more exercises, talk about his trach being removed on the 9th. Are we ready? I still have to suction him, averaging once a day.   Maybe we need to wait till the construction is done?  I don’t know. we will just have to wait and see.  By afternoon the rain has stopped my husband gets home, he went to Costco, brought me roses for our anniversary.  We move the refrigerator, shelves and leave only the small freezer in the back, which I can move once I clear out some “storage space” in the bedroom, now storage room. That room will take me a week to clear out so I try to avoid it. We have a nice dinner, relax and get to bed early, meaning by 10:30.  The contractors show up in the morning to begin work.

March 21 Thursday  Colin is sleeping when the workers show up. 3 guys to begin scraping, moving the washer/dryer to the new laundry room (the old office/store room), remove the garage doors and prep the garage concrete for demolition. The noise is not too bad today. The remove the cabinets and my deep laundry sink, move the washer and dryer.  Then the start to remove the siding from the house. Colin and I are outside in the spring sunshine observing and being tortured by the worst Christian music. No offense meant but we decided, it’s all written by the same person and the Christian God only allows a piano for musical devotion.  I know this music is very inspirational for those who worship but for us, techno dance and rock n roll in our hearts, it is downright painful. We lasted about 90 minutes before returning inside.  The crew was finished about 4, my husband was home by 5, we had dinner and relaxed for the evening. Early morning again tomorrow, Colin has a doctor appointment and we need to go to his bank. We are all in bed by 10:30. Colin didn’t get me up at all, but the dogs did. Damn.

March 22 Friday  Contractors making ALOT of noise by 8:30. I make Colin breakfast, get him dressed and we are leaving by 11. The bank goes smoothly, I am added to his account.  We get to the doctor and have to re enter all his information for their new system, which is the same as the hospital system. So it has all his hospital information, but none of the information from his visits to the doctor before. WTF? I think they don’t know how to use it. Colin discusses his medication issues and he picks up a new doctor referral  Now a neurologist will come on board.  We will be contacted for the appointment. We get a snack, pick up prescriptions and head home.  We get home by 4:30 and the workers are still there. The foreman asks if I heard the news. Mope I tell him. Well, the cement demo began and they immediately hit the hot water pipe.  We have no hot water till tomorrow.  Ok I tell him, we will manage.  I wish them a nice weekend. One of the cement workers call out to me.

“Did you work at Sunnyside?”  I tell him yes, thinking fuck me I do not recognize this person.

” I remember you, you are Ms. Sanchez. My wife had you.”  Good, there was a reason I did not recognize him other than pre- Alzheimer. “She is in the car.”

Sure enough a student from about 9 years ago emerges. She looks healthy, happy, has 2 children and is a dental hygienist. I remember those two dating in high school. I chat briefly since Colin needs to Facetime with his brother. I am pleased to see them doing so well. She brought her daughter up to see the countryside in the spring. A good time as all the wildflowers are opening.  I have to go back inside, they leave soon after. Amazing, former students just pop up all over.

My husband picks up Indian food for dinner,I open some wine we watch a movie. We are all in bed by 11:30. The plummer should be here about 9:30 to make noise repairing the pipe.  Colin is tired, the manual chair does not support him well which fatigues his neck and shoulders.  He

March 12  Tuesday  His father will be visiting on Saturday. I really didn’t want him to be around but my husband says it will be good for us both. Colin gets another visitor and I get a break. I need to start looking for care givers but I must finish the IHSS registration and orientation. That will require 2 full days away from home, with Colin and not much else  going on. I keep waiting for his diarrhea to be gone so that is not a hindrance to his comfort. We do have an appointment for an ultrasound on Friday, but I can’t fit them both in.

He didn’t sleep well so is tired when I give him his morning meds. I let him sleep. The wheelchair guy arrives at 9:30 to put new armrests on, with elbow cups and has the head array, which he really doesn’t need.  The guy works on the chair for about 90 minutes then does a wheelchair show for Colin. The correct manual chair is here also, which he shows him as well. He can’t wait around for me to get Colin in it to make any final adjustments so he will be back if there is any need to adjust the chair.

I get him fed, washed and dressed then we go outside to enjoy the wonderful pre spring sunshine. The trees are blooming so he has me take some pictures to post on Facebook. We hang out in the partial shade, a couple of deliveries come (the diapers I ordered YAY!!) and then his friend returns to hang out some more.  I use the time to do laundry, dishes, and clean up around the house. My husband gets home, we hang out for a bit outside in the evening sun, having wine. It was like the days before the accident. Colin and his friend are hanging out inside when we go in so I can make dinner. Colin eats well, we talk to Ian on speaker phone while we eat.

I relax with my husband till Colin’s friend leaves then get Colin into bed, cleaned, comfortable and medicated. I am hoping he sleeps better so we can do more therapy tomorrow, increasing the amount to get his strength up. But he doesn’t.

March 13 Wednesday  He has me up several times through the night, unable to sleep or get comfortable. By 7 am I decide he can rest as long as he needs to but even sleeping till 11 does not help him feel better. His sensations are going crazy. From his injury level down all nerves seem to be firing constantly. He is uncomfortable all the time.  I have been zapping his calves more after he didn’t like the way they look. Naturally, the muscles are atrophied and it bothers him. So I told him I would do EMS on his calves more to maybe slow the process. They do contract, and he feels it, so it is better than doing nothing.

He is grumpy, uncomfortable and tired. I get him fed, up and we go hang out in the sunshine for the afternoon. I massage his hands and do ROM to keep them from stiffening. Once the sun goes behind the trees we come in, I zap his hands. By the time dinner is over, he needs to get back in bed. The sensations have not decreased all day. I get him in bed earlier than usual so I zap his calves some more. The good news is his one BM is NOT diarrhea. We have kept up with the twice daily probiotic, he gets some yogurt daily. Maybe we can get past it this time.

I let him rest and watch a movie while I clean up the kitchen. By 10 I get him ready for bed, his meds by 10:15 and lights out by 10:30. But again, he does not sleep well.

March 14  Thursday.  I am up a few times to help adjust him, get him comfortable. The dogs had been barking at something in the yard and Sassy was right in his lap joining in. At 3 he was still not sleeping. By 6:30 he was grumpy again. I gave him his meds, starting zapping his shins and let him sleep. I had to get him up earlier today, it was bath/hair wash day (over due also). We have to go to town early tomorrow so it all needs to be done today.

While he is sleeping the hospital calls about his ultrasound test tomorrow. She asks all kinds of questions that are on file in the hospital records. She has no idea why he is going to have the exam. She has no idea he is a quadriplegic and instructs me to call the radiology department myself to “inform” them. This is the hospital he spent 4 months in. This is the same staff that did his ultrasound before. Why the fuck don’t they know his history? Why am I telling medical staff why he is there? WTF are his medical records for, to cover their asses and never be looked at? I am so disgusted with the implementation of medicine in this country. They have all the information and I am answering the fucking questions? I should be the one getting answers! I leave a message for the ultrasound staff and I am willing to bet they have no idea what TED hose are nor how to deal with a wheelchair transfer. We will find out tomorrow.

March 15 Friday  Waking him up at 7:35 makes for a grumpy, tired start. After 2 cups of coffee he complains, groans, grimaces then finally resigns. I have him washed, dressed and in the chair by 9:30. We are heading to town by 9:50.

First stop is the IHSS Public Authority to turn in my registration papers. We get there, I transfer him out with an audience. An old lady offering help and smoking. We decline her offer but she hangs around asking questions while I am getting him out of the car. Once inside we get to the second floor and take a number. Nobody else is there so we are next. He is cold. I ask if it is ok for me to go get him his jacket, they assure me it is fine. When I return I am being demanded to come to the counter as if I left without telling anyone. I give all the paper work, all seems ok. There is some flack about a couple things but when I let her know I called and asked about every fucking item on that packet, she backs off. Otherwise she was a bitch at times.

Glad to be free of the county mentality, stuck with a 2 hour orientation in a couple of weeks, we go meet our friend for lunch. Lunch was good, enjoyable. Colin ate well, as did I and we left with enough time to make his 1:30 ultrasound at the hospital..we thought.

Once at the critical care parking, nearly every handicapped parking spot is taken up by tents. Wtf? They need some tent space so take it away from people who need it the most?

We manage to get lucky and someone leaves so we get a good spot with lots of room. I transfer him out, this is number 8 transfer today, and we head in. We get in line, are called up and told to go wait for registration. I ask why did I talk to someone on the phone yesterday? “That was ‘pre-reg’ ” I  am told. We wait for 20 minutes then get called up to register. They ask the same questions as pre reg make me sign a form and we go wait some more. Another 20 minutes passes before the ultrasound tech comes out. She says she got my message and they are ready for him.  She asks if he can get on the table himself. Colin and I look at each other.  I remember distinctly in the message he is quadriplegic. Perhaps I needed to include a definition for the hospital personnel.

Regardless, we tell her he needs a slide board and I can get him on a table. We get back to the exam room and a couple guys come in assuring us they can transfer him. Then they go get a body board, used for moving patients from gurney to table. Patients who are supine, not sitting. I actually have to tell them that is not a slide board. They all stand around looking stupid so I volunteer to go get our board and get him on the exam table. They all sigh with relief and disappear while I go down, get the board, transfer him so he can get the ultrasound. Once he is done, I transfer him back and we leave. Good thing I called in advance to let them know a wheelchair bound person would be coming in.

We go meet the contractor and give him a check. They should be starting within a week. The Colin and I head home. My husband will be visiting his grandparents, eating with his family tonight so we have are on our own dinner schedule.

By 7:30 he needs to get out of the manual chair. We have dinner, watch a movie. My husband gets home around 9:30. I have Colin ready for bed by 10:30. He is tired and having the same uncomfortable sensations he seems to always have these days. We do what we can to get him as comfortable as possible then I go to bed. He has a busy day tomorrow, his dad will be visiting.