Early Friday morning

My doctor has decided to put new restrictions on my activity level.

Before surgery, he said I'd probably be in the hospital recovering for about a week and then I'd go home with no brace. Since surgery, he said that I will go home with a brace that I will have to wear it for 3 months. Originally we had planned on someone coming by my house daily to help me get the brace on and off and stuff like that. Turns out my insurance won't pay for that. So he said he'd like me to spend a week in a Skilled Nursing Care Facility. In other words, a nursing home. This was rather shocking and upsetting to hear, but you do what you gotta do. So I quickly accepted it and was ready to carry out our plan of one week in a home where I would work on building my strength back up. My wonderful friend Justine drove around to check out some nursing homes for me because there are two types of homes... those that smell like nursing homes, and those that don't. It was looking like it was going to be between a home on Stark St and one on Belmont. The one on Stark was recently renovated. It has big windows and it looks bright and cheery. Whenever I drove by the place I always thought to myself that it looked like a nice place. I pretty much assumed it didn't smell like a nursing home. Thank goodness Justine volunteered to check it out in advance. She said that it was indeed bright and cheery, but it had "the smell". So then she checked out the other place on Belmont. She said it is rather dark and gloomy, but it didn't have the smell. I pretty much knew immediately that I'd have to go to the dark but non-smelly place and when I asked her for her opinion, she said definitely the darker place.

Earlier that day my doctor told my physical therapist that he wanted me to stop helping with transfers and such. He didn't even want me to roll over in bed without someone helping me. He also said that he wanted me in rehab for 3 weeks (plus or minus 1 or 2), where they could take care of all my needs. Yes, I could get out of bed, but no, I couldn't do it on my own. Yes, I could change my sleeping position during the night, but under no circumstances was I allowed to do this by myself.

Since my extent of care had been restricted even further, my case worker here at OHSU started thinking about alternatives to a nursing home. She's working really hard to get me in to RIO. I've heard lots of good things about RIO. They deal with lots of people with spinal cord injuries. Usually anyone in Portland with a spinal cord injury ends up in rehab at Rio.

I never went through an inpatient rehab myself. Usually after a spinal cord injured person recovers enough to get out of the hospital, they get sent for weeks to months to a rehab where they learn how to live with their spinal cord injury. Since I was injured when I was only 8 years old, I didn't need to learn how to bathe myself, dress myself, cook from a wheelchair, etc because I had my mom to do all those things for me. As I aged, they slowly introduced me to bits of pieces of outpatient rehab. For example, when I was close to getting my driving license, I spent some outpatient rehab time learning how to get myself and my chair in and out of a car.

Anyway, it is 2:30am and I lay awake in bed wondering my fate. Will it be a dreadful nursing home or rehab? Will it be 3 weeks, or will it turn into 3 months? There aren't private rooms at RIO... can I handle sharing a room? Especially a room with someone who had a very recent spinal cord injury? How is all this going to take it's mental toll on me? I've already been away from home for close to 2 weeks and now I've probably got an additional 3 weeks before I can go home? I miss my dogs and kitties so much. I miss my bed, my shower, my house, my neighborhood, my laundry, my food, my lava lamp so much. I miss the color on my walls and the textures and colors of the fabrics in my house. I miss having my neck and my arms free of foreign objects. I miss not knowing what it's like to fall asleep at night only to know that I'd soon be waking up to someone wanting a tube of blood. I miss the lack of slamming doors (story about that to follow after I leave this place).

To end on a positive note, I am very thankful that I am alive. It wasn't long ago when there was simply nothing doctors could have done and I would have died from my injuries. I'm thankful for the care I've received from the doctors and nurses here. They've treated me like a human being instead of a lab rat, which is what I got when I was a kid. Unlike when I was kid, they have listened to, but not always respected, my wishes. They've been kind and patient with me. And I believe they have done their very best to fix me.

I hope I get the chance to speak to my doctor today about why his thoughts on my recovery have changed so much. I saw his PA yesterday and asked her. She said she didn't want to speak for him, but she thinks he just wants to take every precaution possible so that I have a good outcome. Julie, do you remember what she said?

Another thing my doctor recently said was that he "hopes" the fusion will heal. He said that sometimes due to infections or something, they just cannot get a solid fusion. He said that this surgery cannot be performed on me again. That confuses me. Why can't it? Funny how it's gone from a pre-surgery of "You'll be out of here in a week with no brace and a rock solid fusion that you'll never have to worry about again, to a post-surgery of "I hope your fusion will heal and that you'll be able to go home in a few weeks and you will only have to wear the brace for 3 months." It's not like he talked me into this surgery because he was looking for a job. He's one of Oregon's best spine surgeons and he has many patients. Many very happy patients. I still hear nothing but positive things about him. I'm guessing that my case has turned out to be much more complicated than he expected. As for why that is, I don't know at this point.

My hope is that I will be transferred to RIO today. I will let you know.