Everything had been going well in the six weeks since I was discharged from the Wound Care Center, and in the three weeks that I have been discharged by my visiting nurses. During this time I had continued to monitor the spot where my wound had been so that I would be aware from the beginning if anything changed. Last week I asked my boyfriend to take a picture of it so that I could see what was going on. I got a little nervous when I saw the photo. It seemed to us that a tiny bubble had developed at the same part of the wound that was the slowest to close. My instincts told me to call the doctor right away but for some reason I decided to wait. Why I decided to wait is completely beyond me, especially after all I had been through in the past three years. A few days later when I saw another photo I was less disturbed by it because the bubble seemed to have flattened out. I was calm, yet still felt like maybe it was worth a call to my surgeon. I decided to wait another few days, until I saw a third picture. The third picture wasn't exactly of a bubble but that spot had turned very red, it looked almost like a bright red jellybean, except a whole lot smaller.
I called my surgeon's office to try to get his opinion on what he thought I should do and it turns out that he was out of town. After I had sent messages to my surgeon through his office, I was told that he had said he would be back the following week but that I could go to the Wound Care Center before that if I did not feel comfortable waiting for him to return. He also said that I could also email him the pictures if I wanted his eyes as close to the situation as they could be at that point. Needless to say, I had had enough of waiting and immediately called and set up an appointment for the next morning, and then emailed the pictures to my surgeon. Obviously I was nervous about what was potentially happening but I also had it in my head that sometimes I get a little overly paranoid about this sort of thing and so there was a chance that I would be told that everything was fine when I had my appointment.
When I got there I saw one of the nurses that I had seen before and was very comfortable with and explained to him what was going on and that while I hoped I was just being paranoid I really couldn't be sure that I was. When the wound was looked at I was told that a small part of it had opened again. To say that I was displeased with this news was an understatement to say the least. When the doctor that I was seeing came in, I told her a little bit of the backstory and of what I felt was going on and then she proceeded to take a look. When the wound was probed she said that it had some depth to it. I held it together at that news but was incredibly unhappy. That is when I was told, that my instincts to get it checked were correct and that it was good that I hadn't been complacent. The doctor then told me that we would need to call and get my visiting nurses back and that she wanted me to use Hydrofera Blue again. She also said that although on physical exam she did not appreciate any bone involvement, she did want to order an MRI just to be on the safe side. At this point, being on the safe side is totally okay with me!
My instincts to get in touch with the doctor when I first saw that something may have been weird were correct. The feeling was not of absolute doom and gloom though so I waited. Waiting, though probably not the best decision was one that I myself made and I realize that beating myself up over it is not going to help anything. I am currently waiting for the MRI to be scheduled and hopefully that is able to be done before my surgeon comes back next week. I am now playing the waiting game until we find out more information.
Showing posts with label instincts. Show all posts
Showing posts with label instincts. Show all posts
Tuesday, June 26, 2012
Wednesday, May 2, 2012
A New Idea
A few days after my appointment with the surgeon someone from his office called me to set up the surgery. It was scheduled for only one week later. The morning of the surgery I woke up in an incredibly good mood considering that just a few hours later I would be laying on an operating table. When I got to the hospital, I met with my surgeon who explained to me what his game plan was going to be. He was first going to get rid of all non-viable tissue, including a small portion of the bone. Then he was going to place antibiotic seeds inside the wound cavity. His entire plan up till that point was very familiar to me being that he had done all of that previously. He then explained, that he was going to use something called GraftJacket inside the wound. Then he hopefully would just be able to suture the edges together.
GraftJacket is made of human dermal (skin) tissue components. Its purpose is as a repair matrix that will then rapidly be converted to the patient's own tissue by quickly renewing blood, cellular and nutrient activity throughout the matrix. Over time, the tissue graft aids in the repair of the wound and is replaced by tissue like the patient's own. As he explained it to me it would ideally help to fill in the tunnel of my wound.
All of this sounded like it was a good plan and again I went into the operating room with no hesitation in the least. The surgery happened exactly as the surgeon had planned for it to go and approximately an hour later I was being wheeled into the recovery room, aware of everything that had gone on and having heard, that at least for the meantime the wound was sutured closed. I was at home feeling very well within just a couple hours of the end of the surgery. When I got home, I called my nurse, just like I had said I would do and told her what the surgeon had done and what the following visits wound care orders were. All the surgeon wanted done was for the dressing to be looked at and if it was still intact and clean that it was to be left alone. The nurse came two days after the surgery for all of five minutes, the dressing was clean and dry so she did not change it. That was totally fine with me, although it did end up being changed the next day because it had gotten soiled. When the nurse changed the dressing she said that it looked great and that everything seemed to be fine. I was so incredibly happy to hear that, yet I was still trying to remain only cautiously optimistic.
Six days after the surgery, I was back at my regular wound care appointment so that my surgeon could make sure that everything was healing nicely. He said that it looked great but that he wanted to leave the stitches in place for another week, just to give it more time. By then I didn't really care what he said had to be done or not be done, I was just incredibly glad that things seemed to be looking in such a positive direction.
Things were going really well and I was doing my best to stay off of the wound as much as possible, as a matter of fact I had only been up on it to ride home from the surgery itself and to go to and from that wound care appointment. That was actually harder to do than it had been in the past, just because I felt so incredibly well. I was determined that I was not going to sabotage the healing process so I did not get up unless it was absolutely necessary.
As sometimes happens, just as things seem to be going really well, WHAM you get smacked upside the head with a dose of reality. My reality came about twelve days post-op, when I woke up very early in the morning with this weird emotional 'something isn't right' feeling. While I was worried I already knew that my visiting nurse was going to be arriving at my house within a few hours. Before I had even fully explained to her how I thought things were going, she had taken off the dressing and was making an 'uhoh' sound. It turns out that the stitches were pulling and didn't seem to be holding the wound closed. To take a quote from Yogi Berra, 'this was like deja vu all over again'.
GraftJacket is made of human dermal (skin) tissue components. Its purpose is as a repair matrix that will then rapidly be converted to the patient's own tissue by quickly renewing blood, cellular and nutrient activity throughout the matrix. Over time, the tissue graft aids in the repair of the wound and is replaced by tissue like the patient's own. As he explained it to me it would ideally help to fill in the tunnel of my wound.
All of this sounded like it was a good plan and again I went into the operating room with no hesitation in the least. The surgery happened exactly as the surgeon had planned for it to go and approximately an hour later I was being wheeled into the recovery room, aware of everything that had gone on and having heard, that at least for the meantime the wound was sutured closed. I was at home feeling very well within just a couple hours of the end of the surgery. When I got home, I called my nurse, just like I had said I would do and told her what the surgeon had done and what the following visits wound care orders were. All the surgeon wanted done was for the dressing to be looked at and if it was still intact and clean that it was to be left alone. The nurse came two days after the surgery for all of five minutes, the dressing was clean and dry so she did not change it. That was totally fine with me, although it did end up being changed the next day because it had gotten soiled. When the nurse changed the dressing she said that it looked great and that everything seemed to be fine. I was so incredibly happy to hear that, yet I was still trying to remain only cautiously optimistic.
Six days after the surgery, I was back at my regular wound care appointment so that my surgeon could make sure that everything was healing nicely. He said that it looked great but that he wanted to leave the stitches in place for another week, just to give it more time. By then I didn't really care what he said had to be done or not be done, I was just incredibly glad that things seemed to be looking in such a positive direction.
Things were going really well and I was doing my best to stay off of the wound as much as possible, as a matter of fact I had only been up on it to ride home from the surgery itself and to go to and from that wound care appointment. That was actually harder to do than it had been in the past, just because I felt so incredibly well. I was determined that I was not going to sabotage the healing process so I did not get up unless it was absolutely necessary.
As sometimes happens, just as things seem to be going really well, WHAM you get smacked upside the head with a dose of reality. My reality came about twelve days post-op, when I woke up very early in the morning with this weird emotional 'something isn't right' feeling. While I was worried I already knew that my visiting nurse was going to be arriving at my house within a few hours. Before I had even fully explained to her how I thought things were going, she had taken off the dressing and was making an 'uhoh' sound. It turns out that the stitches were pulling and didn't seem to be holding the wound closed. To take a quote from Yogi Berra, 'this was like deja vu all over again'.
Monday, February 6, 2012
Two Steps Back
I think that I allowed the surgeon to go ahead and change my wound care because up until that point I had never really had an experience with a doctor being completely wrong about a course of treatment. Having said that, I ignored the warnings that my gut was sending me and went along with her plan to switch me off of the wound VAC and to let her prescribe wet to dry dressings, using a Dakin's solution.
Dakin's is a diluted bleach-like solution that in my case was supposed to be poured onto a gauze pad and then the gauze was supposed to be used to pack the wound. The idea of this is that as the solution is drying on the gauze any 'gunk' from the wound will stick to the gauze and then be removed the next time the gauze is replaced. The idea behind this 'mechanical debridement' is that by removing all of the unhealthy tissue and bacteria the wound bed will become more vital and able to regranulate better. The problem with it though is that there is no way to prevent the debridement from damaging healthy regranulating tissue. While this for the most part made sense to me I had a feeling that my wound was too deep to really get very shallow on its own and was mildly concerned that it would set back the healing instead of allowing it to progress.
When my visiting nurse came a few days later to change the dressing she expressed her concern that the doctor I was seeing didn't seem to be making much sense. While I agreed with my homecare nurse I still chose to continue seeing that doctor and following her instructions, much to the annoyance of my nurse. This is where I became my own worst enemy and just decided to be reactive to the situation and not proactive about any of it. My reaction to it was to just become potentially the most patient person on the planet. Despite the fact that I was beginning to truly believe that the doctor didn't know her Gluteous Maximus from her Humorous I continued to let her change the wound care instructions at will, and repeatedly kept telling my home care nurse to just give it a chance and to give my body time to heal. All that decision did was make a bad situation even worse.
Dakin's is a diluted bleach-like solution that in my case was supposed to be poured onto a gauze pad and then the gauze was supposed to be used to pack the wound. The idea of this is that as the solution is drying on the gauze any 'gunk' from the wound will stick to the gauze and then be removed the next time the gauze is replaced. The idea behind this 'mechanical debridement' is that by removing all of the unhealthy tissue and bacteria the wound bed will become more vital and able to regranulate better. The problem with it though is that there is no way to prevent the debridement from damaging healthy regranulating tissue. While this for the most part made sense to me I had a feeling that my wound was too deep to really get very shallow on its own and was mildly concerned that it would set back the healing instead of allowing it to progress.
When my visiting nurse came a few days later to change the dressing she expressed her concern that the doctor I was seeing didn't seem to be making much sense. While I agreed with my homecare nurse I still chose to continue seeing that doctor and following her instructions, much to the annoyance of my nurse. This is where I became my own worst enemy and just decided to be reactive to the situation and not proactive about any of it. My reaction to it was to just become potentially the most patient person on the planet. Despite the fact that I was beginning to truly believe that the doctor didn't know her Gluteous Maximus from her Humorous I continued to let her change the wound care instructions at will, and repeatedly kept telling my home care nurse to just give it a chance and to give my body time to heal. All that decision did was make a bad situation even worse.
Friday, February 3, 2012
Some Progress
While I was happy to be home from the hospital I was not pleased with my situation. I yet again had to get used to different nurses coming into my house at least two times a week to change the VAC dressing and I also had to see the surgeon once a week so that she could keep an eye on my progress. While I tried to remain upbeat and positive that eventually things would all work out I was also working myself into quite a mess of emotions. I had to emotionally adjust to the wound VAC being necessary in the first place. While I was having a hard time with that the most difficult physical adjustment was trying to figure out how to sleep. As I've said I was on a Clinitron At-Home bed, which is filled with sand. My cousin once felt it an said that 'it felt like it is filled with a billion babies that are punching at you.' While that may sound funny I have yet to figure out a better way to describe how it felt. I figured that I would just have to relax and that eventually sleep would come.
While I was struggling to sleep I had to manage to fit in nursing visits and doctors appointments into my life. At this point the visits were rather stressful because the VAC was being very particular about how it was sealed. The nursing visits were scheduled to take a hour each time and there were quite a few that ended up taking two hours each. Finally one of my nurses said that a representative from the VAC company would be in my area and that she would like her to come to the next visit and hopefully she would have some suggestions to get it to work better. I agreed because I figured that if we could get the machine quieter that maybe I would be able to sleep. The representive came the next visit and showed us a few materials that we could use to get it to seal better. While they did in fact help they by no means made it silent.
During a subsequent doctors appointment I explained to the surgeon that it had been at that point a solid four weeks since I had slept properly and asked her if she could prescribe something for me to take temporarily. She said that I would need to go see my primary care physician for that. While I understood her reasoning I was not pleased with having to get out and go to another doctor, considering that is no easy task. See, I do not drive so all of these appointments needed to be scheduled around times when my family was available to bring me to them.
When I got home I called my regular doctors office and left a message for her to call me back and generally what it was about. I did receive a return call, but not from my doctor, but from her secretary. The secretary explained that the doctor would need to see me in the office to discuss prescribing something to help me sleep. While I was less than pleased, at this point I wasn't surprised so I went ahead and made an appointment to see her a few days later. During the appointment I caught her up on everything we were doing and all of the special equipment I was adjusting to and explained to her that I was having difficulty sleeping, partially due to noise and partially due to stress I assumed. She did prescribe a medication for me to take that she thought would help. Then she said that if it didn't help to call her back and that she would tell her secretary that with me this did not require another appointment. I left the doctor happy on both accounts.
That night I took the medicine hopeful that it would work. About half an hour after I took it I found myself feeling incredibly drowsy, so I turned off the light and the next thing I knew it was the next morning. Finally, I woke up feeling human it was the greatest feeling ever.
The following weeks consisted of a regular routine of nursing visits and doctors appointments. The wound VAC was working, slowly, but working none the less. My nurse was very pleased with the progress as was the doctor. While I was pleased that we were finally seeing results I was a little bit worried that we had now entered October and the wound still wasn't anywhere near the size it was prior to the nurse putting on the 'one week dressing'. The other thing that was weighing on my mind was that my brother was going to get married in a couple weeks. On one hand I was worried that I wasn't going to be able to go and on the other hand I was worried that if I did go and the wound VAC started to malfunction, that dealing with it in a public restroom would be difficult. I discussed my concerns with my nurses and they assured me that actually being that I was going to be vertical in my wheelchair during the wedding that the chances of the VAC causing problems were slim to none. Assured that it wouldn't be a big problem I went to the wedding determined to have a good time and just forget about all of the things that were going on in my life.
The first few months after the wedding consisted of doctors appointments and nursing visits that were pleasing everyone because the wound was responding nicely to the treatment. Until, those warning bells went off in my head again. One morning I was at the doctor's office and while she was pleased with the wound itself she was worried that I seemed to possibly be developing another one. I was worried when she said that but didn't choose to freak out at that moment. She explained that in her opinion the adhesive used to keep the wound VAC drape in place was tearing my skin when it was removed. I asked her where the second wound was forming and she told me that it was on my thigh. My thigh, which we never once applied the adhesive to. While I believed that I had another wound I did not at all agree with her on what had caused it. Somehow, she convinced me that she was right and I was wrong and that going off the wound VAC was the right thing to do. Instead of listening to my instincts and insisting on staying on it I allowed her to change the orders.
While I was struggling to sleep I had to manage to fit in nursing visits and doctors appointments into my life. At this point the visits were rather stressful because the VAC was being very particular about how it was sealed. The nursing visits were scheduled to take a hour each time and there were quite a few that ended up taking two hours each. Finally one of my nurses said that a representative from the VAC company would be in my area and that she would like her to come to the next visit and hopefully she would have some suggestions to get it to work better. I agreed because I figured that if we could get the machine quieter that maybe I would be able to sleep. The representive came the next visit and showed us a few materials that we could use to get it to seal better. While they did in fact help they by no means made it silent.
During a subsequent doctors appointment I explained to the surgeon that it had been at that point a solid four weeks since I had slept properly and asked her if she could prescribe something for me to take temporarily. She said that I would need to go see my primary care physician for that. While I understood her reasoning I was not pleased with having to get out and go to another doctor, considering that is no easy task. See, I do not drive so all of these appointments needed to be scheduled around times when my family was available to bring me to them.
When I got home I called my regular doctors office and left a message for her to call me back and generally what it was about. I did receive a return call, but not from my doctor, but from her secretary. The secretary explained that the doctor would need to see me in the office to discuss prescribing something to help me sleep. While I was less than pleased, at this point I wasn't surprised so I went ahead and made an appointment to see her a few days later. During the appointment I caught her up on everything we were doing and all of the special equipment I was adjusting to and explained to her that I was having difficulty sleeping, partially due to noise and partially due to stress I assumed. She did prescribe a medication for me to take that she thought would help. Then she said that if it didn't help to call her back and that she would tell her secretary that with me this did not require another appointment. I left the doctor happy on both accounts.
That night I took the medicine hopeful that it would work. About half an hour after I took it I found myself feeling incredibly drowsy, so I turned off the light and the next thing I knew it was the next morning. Finally, I woke up feeling human it was the greatest feeling ever.
The following weeks consisted of a regular routine of nursing visits and doctors appointments. The wound VAC was working, slowly, but working none the less. My nurse was very pleased with the progress as was the doctor. While I was pleased that we were finally seeing results I was a little bit worried that we had now entered October and the wound still wasn't anywhere near the size it was prior to the nurse putting on the 'one week dressing'. The other thing that was weighing on my mind was that my brother was going to get married in a couple weeks. On one hand I was worried that I wasn't going to be able to go and on the other hand I was worried that if I did go and the wound VAC started to malfunction, that dealing with it in a public restroom would be difficult. I discussed my concerns with my nurses and they assured me that actually being that I was going to be vertical in my wheelchair during the wedding that the chances of the VAC causing problems were slim to none. Assured that it wouldn't be a big problem I went to the wedding determined to have a good time and just forget about all of the things that were going on in my life.
The first few months after the wedding consisted of doctors appointments and nursing visits that were pleasing everyone because the wound was responding nicely to the treatment. Until, those warning bells went off in my head again. One morning I was at the doctor's office and while she was pleased with the wound itself she was worried that I seemed to possibly be developing another one. I was worried when she said that but didn't choose to freak out at that moment. She explained that in her opinion the adhesive used to keep the wound VAC drape in place was tearing my skin when it was removed. I asked her where the second wound was forming and she told me that it was on my thigh. My thigh, which we never once applied the adhesive to. While I believed that I had another wound I did not at all agree with her on what had caused it. Somehow, she convinced me that she was right and I was wrong and that going off the wound VAC was the right thing to do. Instead of listening to my instincts and insisting on staying on it I allowed her to change the orders.
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