Edges Are Preventing the Healing Process

We continued to treat the wound as the surgeon directed even though at this point my nurse had absolutely no belief that the surgeon was going to be the one that actually would heal the wound. At this point I no longer trusted the surgeon even a little bit. After nearly two years this wound was still basically the same size it was when I began seeing her. I was upset about the situation but was emotionally too "stuck" to do a whole lot to help myself.

The wound care surgeon finally decided to take me off of the Prisma and switch me to a Calcium Alginate dressing that had Silver in it. The dressing is supposed to absorb the drainage from the wound and as that happens the dressing will form a gel which is supposed to keep the wound moist for optimal healing. The silver that is in the dressing is supposed to help protect the wound from a very wide variety of bacteria to hopefully prevent an infection.

None of these things that the surgeon was recommending were helping me so the visiting nurse said that she had a contact with a nurse that specialized in wound care and she would like to bring her to see me to see if she had any suggestions as far as what would close this wound. This was when I decided to do something that would potentially help myself and agreed that the wound nurse could come to the following visit with my regular nurse.

When the wound specialist came to my house with my regular visiting nurse she wanted some background information on what we thought caused this wound in the first place and also what we had tried to use to get it to heal on its own. We answered all of her questions and then she got down to the business of looking at the wound. When she saw the wound she almost immediately knew what the problem was. My wound had developed very thick rolled edges on all the sides.

The wound care nurse explained to me that what had happened was that the epithelial cells had migrated down around the wound edges, the edges were healed so my body thought that the wound itself was also healed. It was explained to me that the only way that the wound would heal is if we got rid of those edges so that the epithelialization of the wound surface could occur. She suggested that we begin using silver nitrate on the wound edges. She told me that basically it would "melt" away the edges of the wound to convince my body that it needed to continue to work to heal the wound. While none of this sounded like it was going to be any fun, I agreed that it made logical sense and I was willing to give it a shot.

My visiting nurse went ahead and called the surgeon to run the idea by her and to get the order so that we could get the supplies. While the surgeon did not seem to think that it was a necessary step she did not object to us giving it a try. The supplies were ordered and a few days later my nurse applied the silver nitrate to the wound edges. When she first put it on it stung for a minute, but it did not feel nearly as terrible as I was warned that it would feel so we went ahead with it for a few more of the nursing visits. When I went back to the surgeon for a follow-up appointment she saw the edges of the wound and flipped out because they "looked awful". I explained to her what we were doing and our thinking behind it. Although she had originally okay'd this treatment once she saw what it was doing she insisted that we stop it and got upset that we had started it "without her orders to do so".  Being that the surgeon was so incredibly displeased, we stopped using the silver nitrate, even though my nurse and I believed that it was an ugly yet necessary step toward the ultimate healing of the wound.

Being My Own Worst Enemy

By this point it was March 2010, and my surgeon and my nurses were not seeing a whole lot of improvement to the wound. During one of my appointments my surgeon gave me the instructions to continue using the Dakin's solution except this time she wanted the dressings changed on a daily basis!! I went home from that appointment in a really terrible mood, I mean how could she instruct us to do something that was clearly not working? Then to add insult to injury to tell us to do it even more often?! While I was upset with these instructions I STILL chose not to say anything to her about it other than "oh, okay sure" and then to tell my nurses the new instructions later either during a phone call or at the next visit I had with them.

The visiting nurse and I followed her instructions for a Very short period of time and then, my nurse blew a gasket. The nurse had been seeing me basically since the beginning and she was finally at her breaking point. She had, had it with the doctor's useless instructions and had completely lost all patience. That is when she told me that in her opinion I should go back on the Wound VAC because that was really all that the wound was responding to. This was the nurse that I trusted the most out of all of the different ones I had seen. She knew her stuff and all of her suggestions had been good ones so I agreed that her idea sounded logical. The nurse, however, was unable to put me back on the VAC without a doctor's order. She tried to get in touch with the surgeon to discuss it with her, to no avail. That is when my nurse called my regular doctor to explain the situation. My doctor listened to the nurse and when she was asked to send Wound VAC orders she did it no questions asked. Finally, maybe we were going to get somewhere with this wound, I thought. 

I was on the wound VAC for a about a week when I went back to the surgeon, that is when she saw that I was on the VAC and knew that she did not give those instructions. That is the first time I remotely vented my frustrations and said anything to her about her suggestions not getting us anywhere. The wound was measured and it was suddenly a little bit smaller, I was happy with this news but very cautiously optimistic. I knew that we had a very long way still to go and my gut feeling was that it was going to be a very bumpy road. While I listened to those feelings I still chose to ignore all signs that I should seek a second opinion, even just an initial consultation. I was again continuing to be my own worst enemy. 

My entire family felt turned upside down by this entire situation. While I was not getting myself another opinion despite all the signs that pointed toward needing one my parents were distraught. They were stuck between the proverbial rock and a hard place, knowing that things were not going well and feeling terrible about it, yet unable to give many suggestions because I am an adult and am capable of making my own choices. I also have always hated feeling like people were pitying me, there's nothing worse in my opinion. In hindsight, I guess that while I was the patient they were really going through the entire ordeal right along side me. 

I was not on the Wound VAC very long when the surgeon decided to take me off of it. Again, I was unhappy with her decision but I had sunken back into my shell and would not voice my opinion to her. She then instructed us to cleanse the wound with normal saline and to then use the Prisma all over again, three times a week. That meant I would either have to see her once a week and the nurses twice a week or to see the nurses three times a week during the "off week" from the doctor. Although, we were all unhappy with the way things were going (or weren't going) the nurses and I continued to follow the surgeon's wound care instructions. 

However, by this point we were nearing the end of the year and were running into an insurance situation. My insurance only allows for a certain number of nursing visits annually and we knew that I would not have enough left to get me through the year. That is when my nurse and I called a family member and asked if she would be willing to help out with a few of the dressing changes. The family member is not a nurse, however, she had previously cared for various wounds that her husband had so we figured she could handle it. She agreed to come to my home for the following nursing visit so she could be shown what to do. That all went very well and she did not have any problem filling in for a couple visits, just to get me through the end of the year. 

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.

Recap/How Many Warnings Could I Possibly Ignore

At this point, my life was no longer my own. My daily activities consisted of either nursing visits or doctors appointments and absolutely nothing else, because I was told to stay off of the wound. I was very annoyed at the situation but I still chose to ignore all the signs that I should have sought other opinions long ago.

I ignored many signs that I wasn't getting appropriate care mostly because I didn't have much belief in myself that I might actually know something better than the doctors and nurses that were treating me. The first warning I ignored was the weird feeling that I got in my stomach when I first met the 'one week dressing' nurse. I couldn't really put my finger on what was causing my bad feeling about her I just knew I had one. Obviously, we will never know, but it is my belief that if I had just spoken up about the distrust I had in her from the beginning that the majority of the problems I had with this wound would not have happened in the first place.

When I went to the wound care center in the neighboring town I cannot say that I got a 'bad' feeling exactly but I cannot say that I got a good feeling about the place either. I had the first appointment with a doctor that I basically remain neutral about, the problems began the following week. The following week at the wound care center I almost instantly got a 'weird' feeling about the doctor that would be treating me regularly. I distinctly remember calling a relative when I got home from that appointment and telling her that I already wasn't sure that I trusted the doctor. My 'gut feeling' just seemed to be proven more correct the day of the surgery when I had to actually ask to see her prior to the procedure. That goes against everything I had ever experienced and thought I knew about how doctors worked. Although, picking which doctor was going to be treating me was my choice I didn't have enough confidence in myself to speak up at that point. Hindsight being 20/20 that was another bad decision.

Although I had gotten all of these 'gut feelings' about my treatment I was my own worst enemy because I truly had never experienced a doctor really not knowing the best way to treat a patient before. I even chose to ignore nurses that I did completely trust when they told me I should consider a second opinion. I remained my own worst enemy for a very long time. I needed to reach MY breaking point with my treatment before I would even consider moving on. Sadly, my breaking point was very far away.

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.

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.

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.