More Surgery

I went into the surgery in a generally positive mindset. The surgeon explained to me that he was going to scrape away a small portion of the bone so that it could be tested for infection. He then cleaned up the bone until he was at healthy bone so that if an infection was present it would be taken care of. After that he placed antibiotic seeds inside the wound cavity. He then placed Adaptic over the seeds, followed by a dry dressing. Adaptic is a type of knitted dressing that is coated in a petrolatum emulsion (petroleum jelly), so that it will not stick to the wound. The intent of this dressing is that it would allow any drainage to come out of the wound, meanwhile it was going to prevent the antibiotic seeds from falling out before my body was able to absorb them.

I woke up from the surgery feeling really well. I saw my surgeon who then explained to me what he had done. I was allowed food and then able to see my boyfriend a short time later. Shortly thereafter, I was discharged to my house. When I got home I was feeling remarkably well and I immediately called my nurse to update her on the new wound care orders that she would begin with me the following day. The new wound care orders consisted of cleansing the wound with normal saline, packing it with Calcium Alginate and then covering it with a simple dry dressing.

The few days following the surgery went really well. I was still stuck at home in a bed recovering from surgery but I felt remarkably well. So well in fact, that it was only about three days post-op that I began writing this blog. See, I had been encouraged by my surgeon during one of my prior appointments to do something while I was stuck at home. When I asked him what I should do he suggested a blog. After getting a resounding 'yes! Do it, I really think you should' from my best friend I began writing.

I continued to have visiting nurse visits at my home and saw the surgeon on average once a week. Things seemed to be going very well. I had every indication that it was getting smaller and that an end may actually be in sight. Being that the surgeon was very happy with the way things were going it was toward the end of January that I had the courage to ask him if he could give me an indication of when I could get rid of the Clinitron At-Home bed. My asking was mostly due to the sand leaking everywhere. I along with my parents were sick of the mess. I was thrilled that he said that I could get rid of it at that point! Finally I'd be getting my room back.

Frustrations

Due to an error with the paper work being sent for the Wound VAC we were unable to begin using the Wound VAC until almost a week later. I was disappointed that it was going to be postponed but I realized that there was nothing I could do so I just accepted the fact that I needed to wait.

When the VAC finally arrived we began the VAC therapy. It was approximatly a week later that the surgeon wanted to see me again so he could check on how everything was going. The appointment with the surgeon was uneventful and all signs were pointing in a positive direction. The surgeon then explained to me that he was going to be out of town for a few weeks and that I should make an appointment to see him in a month.

During that month I continued to use the Wound VAC and have a few nursing visits a week so that the VAC dressing could be changed and so that the wound could be monitored. Everything with the wound seemed to be going well.

By this point the wound was not what was causing me the most stress. The Clinitron At-Home bed was a different story though. The part of the bed that holds the 'sand' is covered by a polyester sheet, which I did not find to be very durable at all. After having had this bed for so long I was finding that it seemed to be tearing which was causing the sand to go everywhere. This was not only uncomfortable to sleep on but I found it nearly impossible to eat while I was in bed. It felt like even if I had just washed my hands that they had a gritty feel to them. When I called the company to ask what to do about it, I was told that because of insurance I was no longer renting the bed so the replacement cover was not going to be replaced for free. Figuring that a piece of polyester really couldn't cost that much I inquired as to the cost. When they told me how much it was going to cost I asked if they had any suggestions how I could fix it without replacing it. I was basically told that I should try to use either electrical tape or duct tape over the tears. That suggestion was fine but only for a very temporary basis. The heat of the bed all but destroys the adhesive on the tape so it basically needed to be re-taped a few times a week.

sand on the side 

sand going up to the top

While this was incredibly frustrating I kept reminding myself that it really would be only needed temporarily, due to the fact that I was on the Wound VAC and so the wound should close. Things seemed to be going well until about a week before I was supposed to see the surgeon. That week I was starting to feel more pain from the wound. I had been told previously that sometimes pain is due to healing so I was not super concerned about it. The other thing that kept me from worrying was the fact that the pain could be relieved with medication. I figured that if something were really wrong that the pain would be more constant and that the medication would not be as effective in stopping it. I mentioned the pain to my nurse during a couple visits and she was only mildly concerned about it based on her opinion of how the wound looked.

I did not really consider making a phone call to the wound care center until a couple of days before my appointment was already scheduled for. I figured that I had dealt with it and it wasn't very severe so it could wait until I saw my surgeon. The day of my appointment arrived and I mentioned to the nurse and the surgeon that I was experiencing some pain. When the surgeon examined the wound was when I felt a whole bunch more pain. It turns out, that bone was now exposed and that I would need surgery. The appointment was on a Tuesday and he looked at me and basically said, 'ok, Friday or Monday which works for you?' I chose Friday being that I figured based on the options I was given that sooner was probably better than later.

Edge Trimming Surgery

While I was waiting for the day of the surgery to arrive I tried not to think about it very much at all. Not because I was nervous, but because I was excited about the possibilities and I did not want to feel let down if things did not go exactly as planned. While I believed that the surgeon could close the wound surgically, he had warned me that based on the location of the wound and just by moving around that the sutures may not actually hold it.

The morning of the surgery I was cautiously optimistic. I went in and met with the surgeon to go over all of the last minute details. That entire conversation was fine, I had a very good feeling that I was where I was supposed to be, being treated by the person that was supposed to treat me so I went into the surgery with absolutely no hesitation.

Being that this was a relatively minor procedure, the surgeon and I had discussed the type of medication that I was going to be given so that I would not feel what was going on. We decided that instead of undergoing general anesthesia that I would just be given "twilight sedation." When they gave me the medication, I basically fell asleep and knew nothing until a little while later when I was roused by an uncomfortable pillow. I asked the person at my head to move it and that was done without a problem. Once that was moved I did not feel any pain, yet I was not groggy enough that I was falling back to sleep so I just laid there and let whatever was happening continue.

Eventually, I asked the person at my head how it was going and what was going on. I was told that it was almost done and that the surgeon was closing the wound, pretty much at that moment. I was really happy when I heard that news. I was wheeled into the recovery room shortly thereafter and pretty soon after that my family member was allowed in to see me. I was fine by then, I felt spectacular. I was given a sandwich and basically being that I was able to eat it without any problem, they discharged me to my home.

I was sent home, with instructions to stay off the wound, and stay in my Clinitron bed except to get up and go to the bathroom. I went straight to my bed when I got home and pretty much did not move until many hours later when I had to go to the bathroom. Getting up out of bed was no problem at all and did not really scare me but when I was getting back into bed I suddenly saw blood, it seemed like it was a lot so I called in a family member to have a look at the situation. My clothes were bloody but it was not pooling, we got in touch with the doctor and he basically said that it was not anything to be super concerned about, especially being that my visiting nurse was going to see me first thing the next morning.

The next morning, when my nurse came I explained to her all that had gone on during the surgery and about the blood situation that had happened once I got home. She then took a look at the surgical site and said that while their was a lot of blood on the clothing I had taken off the night before that the site looked very good and that it was awesome to look at me and not to see a giant hole. She covered the wound and said that she would be back a few days later to change the dressing again.

I spent those few days in my bed and not really moving at all. I was determined that if this wound wasn't going to stay closed that it would not be because of anything I had directly done or not done.  When my nurse called me to schedule her next visit we discussed me getting up to take a shower immediately before her visit and we decided that based on the discharge instructions from the hospital that that would be okay. When she saw the site after my shower she said that it still looked really good but that one of the stitches was beginning to pull but she did not think that anything was wrong, She just warned me to be incredibly careful about it, let me tell you, she did not have to warn me twice. When she called a few days later about scheduling the next visit I she said that again I could take a shower right before she arrived. I asked her if she really felt it was a good idea based on the fact that the stitches were beginning to pull at her last visit. She said that it was okay, so I hesitantly got up and took a quick shower.

When she came and looked at the wound she saw that a bunch of the stitches that had been holding the wound closed that pulled and were no longer doing any good. I was supposed to see the surgeon the following day so all she did was redress the wound and made a call into the office to give him a heads up about what was going on. I was obviously not happy with this news that I was hearing but I was warned that this was a possibility, along with warning me about that possibility the surgeon also said that he was confident that even if it did not stay closed after the surgery that once the edges were removed that it would heal better than it was before.

The next day I met the surgeon at his office so that he could see what was going on with the stitches. When I was in the car on the way to his office I kept feeling some drainage, so I had a feeling that it was not going to be spectacular news. When he looked at it, sure enough the stitches were doing no good at all so he removed them and packed the wound with calcium alginate dressing. I was not really happy that I now had an even larger wound that was open. Yet I believed that it was the thick rolled edges that were preventing it from closing before and that being that those were gone that my body would start to heal it again.

The surgeon then asked me if I would really object to having the Wound VAC started up again to get it going. At that point I did not necessarily care what he said we had to do, I was going to go with his suggestions, based on the really good feeling I had gotten about him all along. I left the office and called my visiting nurse when I got home to bring her up to speed on what all had gone on and what direction we were thinking about going in. The visiting nurse was not happy that the stitches had to be removed but we all new it was a possibility so dwelling on it was not going to help anyone.

Being that this was now a Saturday afternoon the nurse wanted to get the Wound VAC orders as soon as possible so that the company could ship it to me so we could begin the therapy. She asked me for the surgeon's phone number, she called the surgeon, called the VAC company and then called me back. She explained that she had given all of the necessary information and that the VAC would probably arrive on that Wednesday so she would just dress the wound the same way the surgeon had until the VAC arrived.

Is Anything Going to Change

When I was taken off of the Dakin's solution I was thrilled. Not only would I no longer have to worry about my clothing and bedding being bleached-stained but I thought that we were finally moving onto a more effective treatment. The surgeon had cultured the wound and an infection was discovered. While I obviously was not pleased with this new information I figured it was just par for the course. I was placed on Bactroban Cream, a type of topical antibiotic ointment to treat the infection. In addition, the surgeon also instructed that we use a different type of dressing. The dressing that she recommended was something called Prisma. The intention of the Prisma is for the dressing to absorb any gross discharge the wound may be producing, it also has Colligen-like properties that in time would assist my body in closing the wound.

My surgeon decided that she was going to take me off of the Prisma because while it was helping, it was not giving us the desired results. Her next plan of attack made me incredibly upset because, you guessed it, she put me back onto the Dakin's solution, to be changed three times a week all over again. The solution that firstly was not what my wound should have been treated with and secondly was setting me into an emotional tailspin. I was devastated that we were in my opinion taking yet another step backward. I was yet again stuck having to deal with this Dakin's solution staining everything it came into contact with. The only positive about using it this time was that the risk of damage to the surrounding tissue was taken into account so we were using a skin barrier to protect it.

I was by this point feeling incredibly discouraged about the entire situation. I had had the wound for approximately a year and a half and aside from very minor changes it was not doing any better. The doctor kept recommending the same types of therapies that were just not being helpful. I had basically no quality of life, because it was drilled into my head that I needed to keep pressure off of my wound as much as possible. I figured that if I was going to ever get better that I should listen to the doctor so I basically put any sort of social life on hold. I had spent the past year and a half stuck at home in the Cliitron bed, aside from a very few family events that I felt it was important I attend. This was when I think I began to feel so discouraged about the situation that I just shut down. My nurse was trying to convince me that we were wasting time and that I was not going to get any better if I did not seek another opinion. Logically, everything the nurse was saying made perfect sense, except that I think I was numb to the situation. While I was existing I sure wasn't living.

Dakin's is Annoying

Being that Dakin's has a bleach base it has the same ability to stain any material that it comes into contact with, just like the bleach you use to do your laundry. I had decided just after the wound was discovered that until I was healed that for the most part I would only be wearing pajamas or pants that I did not care about, due to the risk of the wound draining. As such I found myself suddenly with a wardrobe of bleach-stained pajama pants. The majority of my friends were jealous that I hung out in lounge clothes and didn't really move. While that was fun for a little while way back at the beginning, the novelty of it had worn off by that point. I just wanted to move around and put on a pair of jeans for crying out loud!

Aside from just the staining aspect of using the Dakin's solution was the factor that it was not what should have been used in my situation. For starters, the wound was clean and didn't need that type of debridement and that product also had the potential to damage the healthy tissue surrounding the wound. All the while, my home care nurse kept telling me that this wasn't what we should be doing for the wound and that it really wasn't going to do any better if all we continued to do was those wet to dry dressings. Again, I found myself being my own worst enemy and basically defending my doctor, despite what I also felt in my gut. As such the wound failed to improve. At this point I found myself basically stuck in a bed I hated, except for during special occassions. Wearing stained, gross clothes and most disturbing of all, not getting any better. Yet, I Still ignored the problem. Looking back I realize that was really dumb but at the time I hadn't really learned to trust myself yet.

I kept seeing the surgeon on a weekly or at that point sometimes biweekly basis. She did not seem to think that the wound was getting much better at this point either. Instead of offering me other options she kept doing what was clearly Not working. I have always believed that the definition of insanity is doing the same thing over and over again, expecting different results. So we were doing something I deemed insane yet I Still chose not to speak up because a part of me wanted to believe that the doctor would come up with something else. That did not happen for a very long time. After being on the Dakin's solution for what probably amounted to four months time she decided to take me off of it. Finally, I thought, she is going to actually DO something that would actually work.

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.

It's All an Adjustment

My family and I had a temporary moment of panic when the Wound VAC first alarmed and then we attempted to solve the problem by patching the leak. See, the wound VAC uses negative pressure to help tissue regranulate from the bottom of the woundbed, therefore, making it less deep. While it does that it is also sucking away any discharge that the wound may be producing. In order for the VAC to properly do its job it must remain sealed. When I moved from my wheelchair to the bed I moved just enough to make the VAC loose it's seal. We were able to get it sealed enough so that the alarm would stop, but it was suddenly not as quiet as it had been. I decided to just deal with it being loud for the one night, knowing that visiting nurses would be coming the following day to check on the surgical site and also to do some instruction on the VAC itself.

A visiting nurse came the following morning to get me all situated and also to re-admit me into their service. See, once I was hospitalized they no longer were involved with my care, so I had to sign all of the paper work and learn about the company again, as is protocol. After we did all of that the nurse got down to the business of showing me and a family member how to set up the wound VAC just in case it should do anything dumb when a nurse wasn't able to come out and fix it.

The VAC works by packing the wound with foam which then helps the negative pressure get to the wound. The foam first needs to be cut to the approximate size and shape of the wound. The nurse cut the foam piece that she needed and then showed it to me. While I did want to know what was going on with my body I had avoided seeing photographs of the wound and although I had heard measurements in the past I didn't really 'get' just how big the wound was until I saw the piece of foam. To the best of my recollection, the foam was about eight centimeters wide. I had no idea at the time just how big that was until I saw it. Then the nurse called in my family members so they could see what to do. Well, when my family members came in and saw the wound they immediately had to leave the room. It was too much for them to handle. That in turn scared me, because while I knew it wasn't a good situation I had never seen those family members get so upset about anything like this before.

The days that followed were very noisy and I didn't sleep very much at all. Partially due to having to get used to the noises that the wound VAC made and also because I had to adjust to sleeping on the bed my doctor recommended. The bed that I was on is called a Clinitron At-Home bed. The bed is filled with a sand-like material that always moves. So that pressure is never kept on one part of the body for too long. In order to function properly it has to be set to a specific temperature. Well, as someone that is usually hot I hated that it best functioned at a very high temperature. The first few weeks home from the hospital were quite an adjustment for me, both emotionally and physically.