On February 19th, 2013 I was discharged from Froedtert Hospital’s Spinal Cord Injury Center (SCIC) rehab unit. I decided to stay until evening on the 19th, because this gave me the chance to do all of my therapy sessions one last time. I even had a surprise – the wheelchair guy showed up with my permanent wheelchair! I would not have to go home with a loaner.
We had one last meeting with the staff (the doctors, nurses, case workers, therapists, psychologist, etc.) who had been taking care of me. They were all very complimentary. Everyone was very impressed with the progress I made, and had a lot of faith in me to keep improving.
My last PT session at Froedtert was in a walking frame known as EVA. This was my third time in EVA, and I was able to walk the width of the gym, and then the length of the gym, and back. It was tiring, but EVA is a tall comfortable frame that makes it easy to support myself, and so I was able to walk. It was a good way to end my inpatient therapy, with the confidence that I can walk, even if I need a big stand-up frame to help me.
And so I went “home”, but not to my own house, to my mother-in-law’s house. My house has a flight of stairs leading up to the bedrooms and shower, and another flight of stairs leading down to my office. That’s too many stairs for someone in a wheelchair. By contrast, my mother-in-law has a ranch house, and because my father-in-law used a wheelchair, she has it all outfitted for someone in my condition. It will be my home until I’m able to handle stairs again.
The days that followed my release from the hospital are mostly “normal” days, which is to say that I went back to work full-time (I work from my home) and I spent time with my family, and so forth. Therefore, I will not detail each day, because they were pretty normal. But, I will give you highlights, especially those that relate to my recovery.
On February 20th, I was back to work for the first time since January 3rd. My co-workers at Profound Logic commemorated the occasion by doing the Harlem Shake. If you haven’t heard of it, the Harlem Shake is a craze that has hit YouTube over the past month or two. They show a scene with one person dancing to a song called “Harlem Shake” where everyone else is standing around doing ordinary things. Then, when the song reaches the words “Do the Harlem Shake”, it changes to everyone doing a crazy dance.
Here’s the staff of Profound Logic (aside from myself, of course) doing the Harlem Shake:
Since I still need a lot of therapy, we decided to hire therapists who would be able to come into our home and help me rebuild my muscles. To our surprise, the physical therapist showed up without any forewarning. It turns out, someone had given her the wrong phone number for me, so she could not call ahead. Not knowing what else to do, she showed up to meet us and straighten out the phone number.
For our first session, we mostly got acquainted with each other and did paperwork. There wasn’t much therapy, yet.
On February 26th, I stood up during my third visit with the in-home physical therapist (PT). She advised me to use the kitchen sink, since it’s strong and is easy to grab onto. I had failed the last time I tried this exercise, but this time I did it! This was progress! Although I had stood up at Froedtert, it was done with special gym equipment, and the help of two therapists. With the kitchen sink, I had done it by myself, with nothing but advice from the therapist. I was able to stay standing for about 60 seconds, not bad for a first time.
I’m finding being at home to be a hard adjustment. There’s more carpet, which is hard to roll the wheelchair over. The doorways are much narrower, which adds challenge, and I can’t call on a nurse at any hour of the day or night like I could at the hospital. I pretty much have to take care of myself, or get help from my wife, but she has many other responsibilities. So I’m finding it difficult, but don’t worry, I’ll overcome this challenge, like everything else.
On February 28th I noticed a problem. Something was happening to the back of my head. A 3 inch by 4 inch patch of my skin turned bright red, and was weeping some yellow fluid. Could this be some strange infection? And my hair was getting matted down and stuck in it. I called my rehab doctor, and spoke to his nurse, but she didn’t have any ideas. She said she’d have the doctor call me back, but he didn’t call back! So, after waiting for one day, I called the doctor’s office again, and spoke to the nurse again. She said that I really needed to be seen, but that the doctor did not have any appointments available. So, I tried my neurologist, the guy who had done the procedure that saved my life. He had worked on that very part of my head, so this might be in his area of expertise. I spoke to his nurse, who said she’d talk to the doctor about this, and he’d call me back. I waited for a few hours, and then got impatient and tried my primary care physician (who I hadn’t talked to since I was transferred to Froedtert Hospital), but he also did not have any appointments available, and suggested that I go to an urgent care clinic. Frustrated, I decided to wait until the next day, and give the clinic a try. But, when the morning came, I finally got a call back from my neurologist’s office. He also was not available for an appointment, but one of his Fellows (who I remembered and liked from when I had the procedure done) could see me if I wanted. Well, that’s a heck of a lot better than an urgent care clinic, so I agreed.
The spot on my head turned out to be a burn caused by all of the radiation they used during the two medical procedures I had. It was strange to me that this burn didn’t show up until more than a month after the procedure, but the doctor said it was normal. He said he hadn’t seen a burn that was quite this bad before, but he also pointed out that since I had nearly 13 hours of radiation during the procedures, it made sense for the burn to be worse than usual. He said this is normal, and that if I just keep it clean, it’ll get better on it’s own. He also recommended taking some extra zinc to help my hair grow back.
He also pointed out that a rash that was on my ear was not related to the radiation burn. He recommended that I see another doctor about that (one that wasn’t a specialist in neurology) but, I decided to just see if it would get better on it’s own. This was a mistake. Five days later, the ear rash was much worse than the burn on the back of my head. Once again, I called my primary care physician, but this time he was available – and it was good to see him. He was very interested in everything that had happened to me with my spinal cord injury, and talking to him was much like talking to an old friend. He prescribed some stuff to help me with my ear, and it did the job.
Both the burn and the rash on the ear got much better over the next three weeks. As I write this, neither one is 100% better, but both are in such good shape that I’m not worried about them anymore.
One of my biggest breakthroughs happened on March 1st. Someone who had previously worked as a caregiver for my father-in-law had left behind a four-point walker at my mother-in-law’s house. (The kind you usually see geriatric patients use.) My PT noticed the walker, and since I was doing so well standing at the sink, she thought we should try the walker. We had great success! With this walker, I can walk about 30-40 steps. As a safety net, the PT stands next to me with a gait belt, and my wife follows right behind us with the wheelchair. If I should fall, the therapist can use the gait belt to pull me into the wheelchair, so I don’t fall on the floor. But, so far, I haven’t fallen!
My brothers-in-law, Dean and Kevin, came over and removed the padding from under the carpet in my bedroom and office. This made it much easier to move my wheelchair around, and has made a huge difference to me. It sounds like a small thing, but you wouldn’t believe how much better this made my life! Thanks, guys!
Another cool thing: I can now, officially, park in handicapped parking spaces. On March 7th, I got the chance to try this out. Of course, I can’t drive at this point in time, but when I’m in the car, my wife can hang the handicapped placard from the rear-view mirror, and park in the best spots in the lot. Pretty cool, eh?
Since my injury, I’ve really been missing my friends in the IBM i community. You know, I really believe we have the best business community out there. I’ve been involved in the FreeBSD community, and in some Windows groups as well, but the quality of the people (as well as the system itself) in the IBM i community is unmatched. On March 12th, I finally had the chance to reconnect. Hurray! I was able to convince my wife to drive me down to Delavan, WI for the WMCPA Spring Conference. We only went for the Experts Roundtable, but it gave me a chance to socialize with my friends again, and it really felt great!
The next day, after WMCPA, I had a checkup with my rehab doctor, the guy who is overseeing my recovery. He was quite pleased with the progress I’ve made, and the appointment went very well. He was also impressed to know that I would soon be leaving to travel for the first time, and speak at a conference: I was going to Atlanta for RPG & DB2 Summit.
I’ll tell you all about my trip to Atlanta in my next blog entry.