Yesterday, I was in quite a bit of pain all day. The pain in my hip feels a lot like it did before the surgery, and that's very discouraging. I'm still hopeful that it will be temporary and will go away as I heal, but I'm preparing myself for the idea that it might be permanent. I haven't seen it myself yet, but my mom saw the incision and says it's 8 inches long. I've seen some of the bruising around it, and it looks horrible, so it's still possible some of the pain is related to the surgery. I can also tell they removed a pretty large volume in there because of the way my skin falls now.
It also appears that I picked up a cold in the hospital. It's not bad yet, but I'm definitely sick. I've had a scratchy throat for days, and I now have congestion slowly building in my chest, and head. Many of you know that I can't cough or sneeze properly, so this could be pretty dangerous if it gets bad. Wish me luck.
Also, today the Ravens play the Patriots for the AFC Championship. I don't expect anything, but I would be pretty excited if the Ravens got to go to the Superbowl.
Sunday, January 20, 2013
Friday, January 18, 2013
Good News
It's been an interesting few days, and it's time to tell you about them, but first I'll skip to the end. I've been back home since yesterday evening, and I've been doing remarkably well. There is now very little pain, and I'm sitting up straighter than I have in months. I'm optimistic things are moving in the right direction.
The fun started Tuesday night when my van, which hadn't been used in about a month decided its battery was dead. Fortunately, Gus was able to jump it and drive it down to Jessica's house where we could put it on a charger. It was still a bit stressful wondering if it would start Wednesday morning. Fortunately, it did.
So Wednesday we had to be at the hospital at 6:30 AM. That's early. Lately I've been going to bed at 2:00 AM and getting up at noon. Fortunately, stress is a great motivator, and getting up turned out not to be a problem.
Once at the hospital, they put me in a surgery prep room, drew some blood, asked me some questions, got me to sign a couple releases, drew some initials on the correct hip to cut, and made me wait for an hour and a half. Turns out they put quite a lot of padding on the recommended surgery arrival time.
At 8:30, they wheeled me into the OR, asked each other a few questions about what procedure they were performing, and then I woke up. I believe the procedure took about 1.5 hours, and the surgeon said it went about as well as could have been hoped for. He said during the surgery, he bent my knee almost all the way up to my chest. I haven't tried it since to verify, but it definitely feels much looser in the socket.
After I woke up, they put me in an Admissions Ward. Apparently that's a place they put people who are being observed until they are either admitted or not. This means it is a place they put people who just came through the ER while they decide whether to put them in a real room. It is also apparently a place they put people who should get a real room when the hospital is full.
I was awake and alert by noon on Wednesday, but was in a bit of pain. I'm not actually sure if you'd call it pain. It was more of a fierce tingling coupled with intense heat. It may not be pain, but it's very intense, and you can't ignore it. It's not something you look forward to feeling. They gave me some oxycodone, and that made me a little woozy, but didn't really solve the pain. The only thing that really solved the pain was lying still, and I was very tired, so that wasn't really a problem.
The surgeon said I could get out of bed whenever I was ready, but I didn't really feel ready on Wednesday, so I didn't try it.
The Admissions Ward was an interesting place to be. The nurses were very good, but
seemed apologetic that the accommodations weren't better. The "rooms",
and there were almost 20 of them, were made entirely out of retractable
curtains. This meant that every conversation on the floor was available
for your review whether you wanted it to be or not. I particularly
enjoyed the 94 year old man to our left who was going to get an
endoscopy to remove a piece of food lodged in his esophagus that was
preventing him from swallowing other food, and the woman to our right
that was complaining about suicidal thoughts related to postpartum
depression. She ended up getting admitted to a psychiatric support
program that does NOT have a voluntary release. So at least I was
entertained during my recovery.
People were coming and going all day and night, so it was difficult to sleep, and all the hospital machines were beeping and whirring all night. It didn't really bother me that much since I had oxycodone, but my mom was not amused, especially when they gave us a new next door neighbor and kept bumping her bed through the curtain wall.
The surgical resident came in the morning and basically notified me that I would be discharged that day. That caught me by surprise. I felt like I was in too much pain to go home, and I hadn't even tried to get out of bed yet. I wasn't sure if I could even sit up. Nobody came to help me try that.
Later, the surgeon came by, and while he seemed surprised that I was in any pain, he was nonetheless adamant that I should go home that day. He also wanted me to know that he subscribes to the school of thought that range of motion exercises in the weeks immediately after surgery promote HO regrowth, so for that reason I should not do any rehab. He thought that for the first few weeks, I should do my daily activities as normal including getting into and out of my wheelchair, but should do no other exercise to my leg.
When my rehab doc came by later that day, she seemed not to remember telling me that I'd probably get to do rehab after surgery, so it looked like I was going home. She did tell me I could request an evaluation from a physical therapist, so they sent me one. When the PT finally arrived, he was able to tell me the sensation I was feeling is fairly normal when the surgeon has to move the nerve like he did for this surgery. It made me feel better about what I was experiencing. He was also able to competently help me do a transfer from the bed into the wheelchair. That hurt a lot less than I was expecting, so in the end, I felt a lot better about going home.
Once we decided to leave it took four hours for them to get us all the things we needed to discharge, and the waiting was exhausting. By the time we got out, it was 5:00, and rush hour was upon us. So it took extra long to get home, and by the time we got home, we were completely worn out, so we had some Quiznos, and went to bed. At that time, I was still in quite a bit of discomfort, and very doubtful about the decision to come home.
At 2:00 AM, I had to get up to go to the bathroom. I was prepared to call my mom for assistance getting out of bed, but I decided to try it myself first. I was startled to discover that I was in no pain at all. It was also apparent that my right hip joint was a lot looser than it had been.
When I finally got up around 11:00 AM today, there was some mild discomfort in my hip, but no real pain. What I'm feeling now is mostly fear. There is a sensation in my hip that is very much like the sensation I used to feel just before pain when I bent the hip pre-surgery, so I'm afraid to bend the hip past that point, but when I do, there really isn't any pain. So I'm mostly just conditioned to fear that sensation.
Throughout the day, I have been sitting more and more upright in the wheelchair, and it has been refreshing to see the world from an even slightly higher vantage. It's much easier to reach the sink from up here for instance.
I have had some issues with some transfers however. Over the last 6 months, I have grown accustomed to using my legs as a sort of kick stand when I do transfers. Because of the restrictions in my hips, it has been impossible to fall forward. I discovered during one transfer today that it is now very possible to fall forward, and I'm going to have to relearn how to do transfers. That will be even worse after I get my second hip fixed, and this is one of the reasons I wanted to do rehab.
The other reason I wanted to do rehab is floor transfers. I never really got good at them when I was at rehab before, and it isn't the sort of thing I'm going to practice here at home.
Anyway, all in all, I think I'm doing surprisingly well, and I'm home and ready for visitors. So if you want to stop by, let me know. My mom is in town right now, and I'm not sure when she's leaving. It won't be later than Wednesday, but may be sooner depending on how I'm doing.
The fun started Tuesday night when my van, which hadn't been used in about a month decided its battery was dead. Fortunately, Gus was able to jump it and drive it down to Jessica's house where we could put it on a charger. It was still a bit stressful wondering if it would start Wednesday morning. Fortunately, it did.
So Wednesday we had to be at the hospital at 6:30 AM. That's early. Lately I've been going to bed at 2:00 AM and getting up at noon. Fortunately, stress is a great motivator, and getting up turned out not to be a problem.
Once at the hospital, they put me in a surgery prep room, drew some blood, asked me some questions, got me to sign a couple releases, drew some initials on the correct hip to cut, and made me wait for an hour and a half. Turns out they put quite a lot of padding on the recommended surgery arrival time.
 |
| Ready and waiting |
After I woke up, they put me in an Admissions Ward. Apparently that's a place they put people who are being observed until they are either admitted or not. This means it is a place they put people who just came through the ER while they decide whether to put them in a real room. It is also apparently a place they put people who should get a real room when the hospital is full.
I was awake and alert by noon on Wednesday, but was in a bit of pain. I'm not actually sure if you'd call it pain. It was more of a fierce tingling coupled with intense heat. It may not be pain, but it's very intense, and you can't ignore it. It's not something you look forward to feeling. They gave me some oxycodone, and that made me a little woozy, but didn't really solve the pain. The only thing that really solved the pain was lying still, and I was very tired, so that wasn't really a problem.
 |
| The incision is about 5 inches long |
 |
| Me in my tiny fabric "room" |
People were coming and going all day and night, so it was difficult to sleep, and all the hospital machines were beeping and whirring all night. It didn't really bother me that much since I had oxycodone, but my mom was not amused, especially when they gave us a new next door neighbor and kept bumping her bed through the curtain wall.
 |
| Kimi, my first and favorite nurse in recovery |
The surgical resident came in the morning and basically notified me that I would be discharged that day. That caught me by surprise. I felt like I was in too much pain to go home, and I hadn't even tried to get out of bed yet. I wasn't sure if I could even sit up. Nobody came to help me try that.
Later, the surgeon came by, and while he seemed surprised that I was in any pain, he was nonetheless adamant that I should go home that day. He also wanted me to know that he subscribes to the school of thought that range of motion exercises in the weeks immediately after surgery promote HO regrowth, so for that reason I should not do any rehab. He thought that for the first few weeks, I should do my daily activities as normal including getting into and out of my wheelchair, but should do no other exercise to my leg.
When my rehab doc came by later that day, she seemed not to remember telling me that I'd probably get to do rehab after surgery, so it looked like I was going home. She did tell me I could request an evaluation from a physical therapist, so they sent me one. When the PT finally arrived, he was able to tell me the sensation I was feeling is fairly normal when the surgeon has to move the nerve like he did for this surgery. It made me feel better about what I was experiencing. He was also able to competently help me do a transfer from the bed into the wheelchair. That hurt a lot less than I was expecting, so in the end, I felt a lot better about going home.
Once we decided to leave it took four hours for them to get us all the things we needed to discharge, and the waiting was exhausting. By the time we got out, it was 5:00, and rush hour was upon us. So it took extra long to get home, and by the time we got home, we were completely worn out, so we had some Quiznos, and went to bed. At that time, I was still in quite a bit of discomfort, and very doubtful about the decision to come home.
At 2:00 AM, I had to get up to go to the bathroom. I was prepared to call my mom for assistance getting out of bed, but I decided to try it myself first. I was startled to discover that I was in no pain at all. It was also apparent that my right hip joint was a lot looser than it had been.
When I finally got up around 11:00 AM today, there was some mild discomfort in my hip, but no real pain. What I'm feeling now is mostly fear. There is a sensation in my hip that is very much like the sensation I used to feel just before pain when I bent the hip pre-surgery, so I'm afraid to bend the hip past that point, but when I do, there really isn't any pain. So I'm mostly just conditioned to fear that sensation.
Throughout the day, I have been sitting more and more upright in the wheelchair, and it has been refreshing to see the world from an even slightly higher vantage. It's much easier to reach the sink from up here for instance.
I have had some issues with some transfers however. Over the last 6 months, I have grown accustomed to using my legs as a sort of kick stand when I do transfers. Because of the restrictions in my hips, it has been impossible to fall forward. I discovered during one transfer today that it is now very possible to fall forward, and I'm going to have to relearn how to do transfers. That will be even worse after I get my second hip fixed, and this is one of the reasons I wanted to do rehab.
The other reason I wanted to do rehab is floor transfers. I never really got good at them when I was at rehab before, and it isn't the sort of thing I'm going to practice here at home.
Anyway, all in all, I think I'm doing surprisingly well, and I'm home and ready for visitors. So if you want to stop by, let me know. My mom is in town right now, and I'm not sure when she's leaving. It won't be later than Wednesday, but may be sooner depending on how I'm doing.
Thursday, January 17, 2013
Post Surgery
I'm out of the hospital and back home. Things did not go quite as I expected. They did not send me to rehab, so I guess I'm back home for the duration.
The surgeon says the surgery went well although I'm in quite a bit of pain. It's been a long and exhausting day, and I'll post more when I'm more awake. Right now, I'm going to bed.
The surgeon says the surgery went well although I'm in quite a bit of pain. It's been a long and exhausting day, and I'll post more when I'm more awake. Right now, I'm going to bed.
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| Pre Surgery |
Wednesday, January 16, 2013
Thursday, January 10, 2013
The Home Stretch
My first surgery is less than a week away. Five weeks ago, somebody told me the time would fly by, and they were right. I don't know where it's gone. I'm a little bit nervous about it, as I think everybody is before somebody cuts them open, but I'm ready. I'm tired of being broken.
A few weeks ago, I figured out how I could sit and sleep without aggravating my hip. That was good, but it required that I sit on my butt in a certain position all the time. My lack of flexibility has prevented me doing as much pressure relief as I should, so the result has been pain in my butt where the hip bones put pressure on my skin, and the beginnings of a sore where my coccyx pokes through. These are potentially serious problems if they get worse, so I have had to modify my behavior to juggle the pain in my butt and the pain in my hip. Now I usually have pain in both, but it's manageable. I think it may also be worse because I had to stop taking some of the anti-inflammatory meds I have been taking because they will make me bleed more during surgery. I think I can handle it for another week though.
In the surgery, they will make what I believe will be a large incision on the side of my hip, and they will work across from the side across the front of my hip, removing chunks of bone as they go. The bone is embedded in muscle, so they will have to poke around to find it. They told me they have a device they can use during surgery to help locate the extra bone, but it doesn't work very well so they will probably use my September CT scan as a road map. So they will do a lot of cutting, and I'll do a lot of bleeding, and when they are done, I will be left with cavities in the muscle where the bone chunks were. These will fill with blood, and I'll need to worry about rupturing them for a time after surgery.
Dr. Dahners says paraplegics like me usually don't have too much trouble with pain after the surgery, but since my spinal injury is incomplete, and because of how much pain I feel from the HO right now, I assume I'll get to enjoy more pain than most.
I did some more research on preventing recurrence of the HO after surgery, and sent a question to Dr. Dahners about an experimental treatment I had read about. His response was extremely thorough with many studies cited that convinced me that his proposed treatment is well thought-out, and that I should not do the radiation therapy. That had been weighing on me for weeks, but I'm now comfortable with the decision.
My information is that I'll be in the hospital probably one to three days after the surgery to recover. After that, I expect they'll send me to rehab. My mom is flying in on Tuesday to see me through surgery, and to help me get setup in rehab afterwards. I don't know where I'll be doing rehab yet, but I have been told that I might get as much as 6 weeks of it. They won't decide where or how much until after surgery.
Part of me is looking forward to rehab. I think this time, I'll spend more of my free time in the gym really taking advantage of the opportunity to get stronger.
Part of me is really dreading rehab. If I'm in the hospital for 6 weeks, I'm going to get extremely bored and tired of the food. I also worry that I'll have a roommate. Last time I got my own room, but having no privacy for 6 weeks would be awful. I also worry that I won't have as many visitors as last time. All the visits with all the outside food made the experience very tolerable last time. So please come visit me and bring me food. I'm sure I'll be sick of the hospital food by the middle of week 2.
A few weeks ago, I figured out how I could sit and sleep without aggravating my hip. That was good, but it required that I sit on my butt in a certain position all the time. My lack of flexibility has prevented me doing as much pressure relief as I should, so the result has been pain in my butt where the hip bones put pressure on my skin, and the beginnings of a sore where my coccyx pokes through. These are potentially serious problems if they get worse, so I have had to modify my behavior to juggle the pain in my butt and the pain in my hip. Now I usually have pain in both, but it's manageable. I think it may also be worse because I had to stop taking some of the anti-inflammatory meds I have been taking because they will make me bleed more during surgery. I think I can handle it for another week though.
In the surgery, they will make what I believe will be a large incision on the side of my hip, and they will work across from the side across the front of my hip, removing chunks of bone as they go. The bone is embedded in muscle, so they will have to poke around to find it. They told me they have a device they can use during surgery to help locate the extra bone, but it doesn't work very well so they will probably use my September CT scan as a road map. So they will do a lot of cutting, and I'll do a lot of bleeding, and when they are done, I will be left with cavities in the muscle where the bone chunks were. These will fill with blood, and I'll need to worry about rupturing them for a time after surgery.
Dr. Dahners says paraplegics like me usually don't have too much trouble with pain after the surgery, but since my spinal injury is incomplete, and because of how much pain I feel from the HO right now, I assume I'll get to enjoy more pain than most.
I did some more research on preventing recurrence of the HO after surgery, and sent a question to Dr. Dahners about an experimental treatment I had read about. His response was extremely thorough with many studies cited that convinced me that his proposed treatment is well thought-out, and that I should not do the radiation therapy. That had been weighing on me for weeks, but I'm now comfortable with the decision.
My information is that I'll be in the hospital probably one to three days after the surgery to recover. After that, I expect they'll send me to rehab. My mom is flying in on Tuesday to see me through surgery, and to help me get setup in rehab afterwards. I don't know where I'll be doing rehab yet, but I have been told that I might get as much as 6 weeks of it. They won't decide where or how much until after surgery.
Part of me is looking forward to rehab. I think this time, I'll spend more of my free time in the gym really taking advantage of the opportunity to get stronger.
Part of me is really dreading rehab. If I'm in the hospital for 6 weeks, I'm going to get extremely bored and tired of the food. I also worry that I'll have a roommate. Last time I got my own room, but having no privacy for 6 weeks would be awful. I also worry that I won't have as many visitors as last time. All the visits with all the outside food made the experience very tolerable last time. So please come visit me and bring me food. I'm sure I'll be sick of the hospital food by the middle of week 2.
Sunday, January 6, 2013
Another Year
Twenty-twelve is over, and I'm not sure how I'll remember it. One really bad thing happened to me last year, but a lot of really good things happened too. More people gave me more love and support in 2012 than at any time in my life, and when I think back, that's what I remember. So I'd like to thank everyone who helped me last year. You made my experience very memorable.
Speaking of memorable experiences, Titus and Brittany insisted on bringing Titus' brother David, and his wive Brianna down and spending New Years Eve with me. I had been expecting to spend a boring and quiet New Years by myself.
Titus spent almost the entire evening practicing wheelies in my wheelchair. He got pretty darn good.
We spent most of the night playing music and watching funny videos on YouTube. I had a great time, and really enjoyed the company.
So I officially declare the 2012 holiday season a success. Thanks to everyone who has visited me or given me food. Happy New Year!
Speaking of memorable experiences, Titus and Brittany insisted on bringing Titus' brother David, and his wive Brianna down and spending New Years Eve with me. I had been expecting to spend a boring and quiet New Years by myself.
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| Brianna, David, Brittany, and Titus |
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| In a wheelie! |
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| Fun times! |
Saturday, December 29, 2012
The Holiest of Days
Every year around this time, we all take a break from our normal daily obligations to stimulate the economy by attempting to spend the same exact amount of money on each of our loved ones that they have spent on us. The purchaser of the best gift earns the right to not feel guilty for the duration of the coming year, and the title, "The Winner of Christmas."
One of the benefits of being horribly broken is that I don't feel that much pressure to attempt a Christmas victory, and I was content to coast my way through this year. Gift cards for everyone!
I hope you all had a good Christmas. Mine was surprisingly good. My parents came down for a few days with my brother. We had a nice time together, and some excellent food. My mom brought sour beef and dumplings. It's a family favorite, and I got to have Gus and Uyen over to share it on Christmas eve. There was also mocha cake which is another thing I don't get when my mom's not around.
On Christmas, we eventually got up and opened some presents. There weren't a lot of presents but we enjoyed opening the ones we had. I got what I asked for.
My college roommate, Bobby, also sent me the most thoughtful gift I have received in years. It was a collection of man-bibs made by his mom. I have a lot of trouble keeping food off myself since I can't lean forward. This is something I will definitely use.
Later, Gus's family came back for Christmas dinner. My mom ordered Maryland crab cakes from a place in Baltimore that ships crab cakes. They're not cheap, but they were fantastic. And once again, I got to share with the Careys so that was wonderful. They do so much for me, I always enjoy it when I can do something nice for them.
Gus got me a gift as well. I had told him I wouldn't mind having an electric tea kettle so I could make hot tea. So he got me one.
I've been enjoying tea all week.
My family is back home now, and I'm pleased to report that my pain was manageable while they were here. I don't feel great, but I'm getting by. Still looking forward to surgery. Still taking it a day at a time.
One of the benefits of being horribly broken is that I don't feel that much pressure to attempt a Christmas victory, and I was content to coast my way through this year. Gift cards for everyone!
I hope you all had a good Christmas. Mine was surprisingly good. My parents came down for a few days with my brother. We had a nice time together, and some excellent food. My mom brought sour beef and dumplings. It's a family favorite, and I got to have Gus and Uyen over to share it on Christmas eve. There was also mocha cake which is another thing I don't get when my mom's not around.
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| Mocha cake preparation |
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| Stockings! |
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| Jonathan opening a gift intended for me |
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| Better than stuffing a towel in my collar |
Later, Gus's family came back for Christmas dinner. My mom ordered Maryland crab cakes from a place in Baltimore that ships crab cakes. They're not cheap, but they were fantastic. And once again, I got to share with the Careys so that was wonderful. They do so much for me, I always enjoy it when I can do something nice for them.
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| The Careys |
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| Getting ready for crab cakes |
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| Hello Kitty |
My family is back home now, and I'm pleased to report that my pain was manageable while they were here. I don't feel great, but I'm getting by. Still looking forward to surgery. Still taking it a day at a time.
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