I would have to say don't become complacent when it comes to your skin and it's care. I went 34 years without any issues and being a C5-C6 quad that may sound pretty impressive and maybe it is to many. But things do happen as we age despite doing everything right. One day after losing nearly 50 lbs. I was using my slide-board to get into bed just as I have countless numbers of times but with the weight loss the skin tends to sag in places we don't always think about. At any rate somehow without knowing it all that extra skin was pinched as I slid into bed. It was probably 2 weeks before it reared its ugly head. It wasn't a pressure sore but the doctor said it was from shearing and had become infected even though it looked like a simple scrap on the outside. Turns out it had become infected and despite treatment early on it just didn't want to heal, even when staying off of it for 2 weeks. They ended up having to do surgery to clean it up and get some cultures from the skin and bone since an MRI showed it had made it into the bone. Now I'm in a facility waiting for flap surgery and getting around the clock IV antibiotics. It will be a long road back but one that has reminded me that things do go wrong even when doing things right.
I'm learning a lot about nutrition from the staff and in many ways I'm teaching them just how different every spinal cord injury can be even if they are at the same level.
Hey all I'm going to give you an update on my original post. So here we go, I'm home now but getting here was another story. I ended up having to have three surgeries, one was to get skin and bone cultures, number two was to have a colostomy done, and lastly the plastic surgery to to close the wound. In total I had what amounted to somewhere around 10 hours of surgery. Add to that 9 weeks of high powered antibiotics to wipe out an UTI, and in the wound they found MRSA and ecoli which had also gotten into the bone. It turns out that's what was causing me to deal with the septic episodes I went through. I was on a special bed (clinatron) for nearly three months and could only lay on my back and left side. In order to eat I could only sit up at a 30 degree angle. I was placed on a high protein diet to aid with the healing and to keep me moving my body I did get both PT and OT. They said you can lose 20% of muscle just laying around doing nothing. I had to leave the hospital and go to a facility that could take care of my needs but even at that I could only be there so long so they moved me to a nursing home to finish up the antibiotics. I won't pull any punches here because the place was a nightmare plain and simple. Way under staffed, terrible food, and the list could go on but that probably fits into another forum thread. But one thing I learned real fast was to make sure you're getting any meds that you've been taking long before any hospital stay. Mine were so screwed up that I started having issues that were downright scary, thank the heavens that my sister is an RN and she went off big time calling the surgeon explaining what was going on. Since I have an alternating air mattress at home that was just as good as the one they had. I got home on December 22nd and had visiting nurses coming in along with my regular aides. Now the incision has healed and I'm going through what the surgeon refers to as sitting protocols. I'm able to get up and in my chair now for a little over an hour three times a day. I have to use my ceiling lift for now since the slide-board would/could put unwanted pressure on the incision. It's been a long rough road back with a little ways to go yet and I sure don't want to go through this again. Sure I might be a little paranoid but following the doctors sitting protocol I'll be getting back to normal sooner than later.
Welcome back wheelzup! You've been through a lot, glad the worst part is over. Hope you have a quick recovery and don't worry, you're not being paranoid. Better safe than sorry!
Hey all, I thought that I'd fill you in on how things have progressed. Since I haven't posted much in the last year or so. In 2016 I progressed slowly but that was from laying around so long. Even now I'm still rebuilding my strength from the entire process, from diagnosis to surgery and recovery is nearing an end. I was able to go fishing in the early part of September 2016 on Lake Erie for some Yellow Perch. I caught my limit and was up for nearly 14 hours straight. We were staying at a state park and it felt great to be outdoors and enjoying it for a change. The hard part was getting used to the colostomy and how my body reacted to different foods. It sometimes can be embarrassing but add a little humor like oh yeah my timer went off, time to change position or at times I'd ask who stole my kazoo to make light of it. Sometimes humor can be a big help in getting through some rough spots. But, I'm still dealing with a very tiny spot where my allergy to tape caused a slight issue that is still there and at times it gives me a scare. I am using a Roho cushion with the smart check device to help me keep the right amount of air in the cushion.I'm free to stay up as long as I change my position with my chair but I will get down for an hour or so before supper just to play it safe. With the heat and humidity of summer, I found that I am sweating where someone with my injury level, C5-C6 shouldn't be according to the book. Moist skin is a good thing but also bad since it can breed things that we want no part of. So this summer I'm off on a longer trip to northern Michigan for some camping, fishing, and to see my youngest niece show her livestock at the Otsego County Fair.
So there you have it the end of one journey and starting a new chapter of my life. If it's as good as the last 36 years has been minus the last couple I figure I'm doing well.
Whheelzup, Glad to see you are doing well. I am c5-6 complete also. Has the colostomy helped with your daily routine? I am considering that but hesitant to take the leap.
Whheelzup, Glad to see you are doing well. I am c5-6 complete also. Has the colostomy helped with your daily routine? I am considering that but hesitant to take the leap.
The colostomy has freed me up a lot, no more long amounts of time to get a bowel program finished. You do need to be careful what you eat but the worst part is gas. There's always that chance that when you pass it you'll get a lot of noise. Everyone's bodies are different so you may or may not have any issues. No matter where I go I carry spare everything in my backpack just to be safe. It can be daunting when it comes to finding the right system that works for you. Also, it can be reversed, just ask your surgeon or doctor about it. There should be an ostomy nurse that will explain the entire procedure and he/she will answer as many questions as you may have. When you get it that nurse will usually teach you how to change it quickly. There is probably another forum on here where you can get more information on how it works.
Whheelzup, Glad to see you are doing well. I am c5-6 complete also. Has the colostomy helped with your daily routine? I am considering that but hesitant to take the leap.
The colostomy has freed me up a lot, no more long amounts of time to get a bowel program finished. You do need to be careful what you eat but the worst part is gas. There's always that chance that when you pass it you'll get a lot of noise. Everyone's bodies are different so you may or may not have any issues. No matter where I go I carry spare everything in my backpack just to be safe. It can be daunting when it comes to finding the right system that works for you. Also, it can be reversed, just ask your surgeon or doctor about it. There should be an ostomy nurse that will explain the entire procedure and he/she will answer as many questions as you may have. When you get it that nurse will usually teach you how to change it quickly. There is probably another forum on here where you can get more information on how it works.
I am getting more information about the colostomy. I want to be more independent and get out of the diapers. Trying to prevent leakage. It is a hard pill to swallow but part of our injury.