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.