My Gut Knows

As soon as my boyfriend and I got back from dinner I asked him to check the wound to see if it was okay. I also asked him to take a picture of it so that I could see it as well. When he saw it he said that it 'looked okay'. When he showed me the picture, my opinion was drastically different. Instead of seeing scar tissue as I had seen after my appointment with my surgeon, I saw that it had opened. It was not the entire wound that opened but the part that had was enough to completely freak me out. 

My boyfriend tried to calm me down and get me to realize that the open part was very tiny and would most likely be okay soon. His saying that got him absolutely nowhere. I was already way too emotional to listen to reason. My boyfriend knows that when I am that upset, the best thing to do is to stop trying to get through to me because it isn't going to work anyway. He went home after suggesting that I try to go to sleep.  I did attempt to sleep that night but was completely unsuccessful. I could not get myself to calm down in the least, regardless of the fact that I knew the visiting nurse that I completely trusted and had become very close with was going to come the following day. 

She called me the next morning and was walking into my room about an hour after we hung up. When she came in she instantly said 'uh oh, what's wrong'? That was based on the look on my face. I explained to her the way I had felt at dinner and what I had seen in the pictures my boyfriend had taken. When she looked at the wound, she did not say a word. After knowing her for two and a half years, I had figured out that her being silent could not mean anything good. I asked her what had happened and she said that yes it was opened but that I shouldn't really freak out. We called and left a message for my surgeon to call her so that she could tell him what was going on. In the meantime she covered the wound with a dry dressing and told me that she would call me once she had spoken to my surgeon. 

As promised, she called me back a few hours later to tell me what my surgeon said about the situation. She told me that he had said her covering it the way she did was absolutely fine and that I was still able to take showers. I was surprised  he had said that I was able to do that being that it had apparently closed during the time I was asked to refrain from showering. My nurse went on to say that my surgeon was very calm about the whole thing and did not seem upset and that if he really thought something were wrong he would have asked me to keep it dry.  Although, all she was saying made complete sense I had been seeing my surgeon for practically a year and had never seen him anything other than completely steady. 

During the entire three years that I had the wound I had only gotten marginally upset about setbacks. This time was completely different. I think it was different because this setback came just after hearing the best news I had ever heard about the wound.  I spent the next couple of days in bed not doing anything, including sleeping. I was entirely too upset to calm down and go to sleep. That made for a very long weekend, while I waited for my Monday nursing visit.  When the nurse arrived she had already been brought up to speed on what had happened and how I was coping (I wasn't). She examined the wound and explained to me that it was really nothing to be that upset about. Shortly thereafter, she figured out that nothing she said was going to help so she showed me another photograph of the wound and then instead of just telling me measurements she actually showed me on a ruler just how small it was. At that point I realized that it was not nearly as much of a problem as I had feared it was. 

Is This The End?

The two weeks I spent waiting to see my surgeon were stressful but only because I was nervous. My visiting nurses kept saying that the wound was doing very well. While, I was very happy with what my nurses were saying I still wanted to hear it from my surgeon directly.
Finally, the day of my appointment arrived and I was in an incredibly good mood. I figured that I would give positive thinking a shot. When my surgeon came in the room and examined the wound he was super happy with what he saw. He then explained to me that it had no more depth and that it was basically done. That moment was sort of surreal, here I was in an exam room exactly three years and one month after the wound was first discovered and I was finally being told that I could shower whenever I wanted, instead of only right before nursing visits and, that we could start thinking about ending the nursing visits all together. While I was so incredibly happy to hear this news it did catch me off guard. While my nurses had been saying very good things they had not said that it was closed at the prior visit, just three days before the appointment with my surgeon. My surgeon said that I could go home and shower right then if I actually wanted to but that I should come back in two or three weeks so that he could make sure things were still going well. I made a follow-up appointment with him for two weeks later and left in the best mood ever.

I was able to hold it together just until my boyfriend and I got to the car, that is when I lost it and three years of tears started to flow. As soon as I got in the car I grabbed my cell phone so I could begin to tell those people that had been the most supportive through the entire ordeal that we could all breathe enormous sighs of relief. The two people that I knew without a doubt needed to be told in person were my parents. So after a quick stop to get coffee and snacks for everyone, my boyfriend and I went to my house to share the good news. When my parents first saw me crying, they initially thought that things had gone very wrong, until a big goofy grin appeared on my face. Soon, I was not the only one in tears.

I spent the rest of that day and the next day laying low and not really doing much of anything. Mostly, because I was not used to being able to do much and also because I was sort of nervous that it had just filled in, was left uncovered for the first time and that it was still probably going to be sensitive. After doing hardly anything for the day and a half following my appointment, I was ready to get up and go do something. My boyfriend and I talked it over and decided that we would go out to dinner. I got ready to go and for one of only a handful of times in the past three years, I was wearing jeans!

I was trying to enjoy one of my first times out that was not due to a special occasion, but I was sort of nervous that it was too soon. My boyfriend kept trying to assure me that I was okay and I believed him, until my gut said otherwise. All of a sudden I got a very creepy feeling in my gut that something wasn't right. This was not based on feeling any drainage or anything more than a little discomfort, it was just a huge knot in my stomach that would not go away. Again, my boyfriend tried to assure me that things were fine and while I wanted to believe him, he is not in my gut, feeling the way I felt. As we were leaving the restaurant, he assured me that he would check the wound when we got home.

Making Progress?

When my nurse saw that the stitches were loosening, I was already reaching for my phone to get in touch with my surgeon before she even had a chance to say that it did not look like anything bad was happening. I called him and explained that while there was no drainage, the stitches were very loose and did not seem to be holding the wound closed anymore. My surgeon said that my nurse should just cover it with a dry dressing and that I should just come to my regular appointment that was scheduled for two days later. Waiting, did not feel like something I was willing to do so I called the wound care center and made arrangements to see him first thing the following morning.

Aside from being worried about the wound in general, the other reason I wanted to see him the next day was because he had previously said that I could go out that evening. I wanted to make sure that being up for several hours was not going to cause any major problems. When he examined the wound he decided to remove the stitches. When he took them out he explained to me that while the edges were not yet closed it was very small and that I could still go out that evening. I was very happy that he said I was still able to go, I just hoped that I would be able to forget about things for a few hours and enjoy myself. I did decide to go on with my plans, though at first I was very much distracted by the sutures not having fully done their job.

I saw the surgeon again the following week and he was incredibly pleased with how the wound looked. He said, that it was doing everything correctly and showed no signs of anything going wrong. I was thrilled to hear that it was now being referred to as very small and not very deep at all. The surgeon was going to be away from the wound care center the following week, so while I was nervous about skipping a week there was nothing I could do about it so I made an appointment for two weeks later.

Although, I knew that everyone was pleased with the way my wound was progressing I could not get a pattern out of my head. It seems crazy, but of the five times that my surgeon had said surgery was needed at least three of them were decided after having skipped over a week or two. Therefore, I was rather on edge while I waited for my next appointment.

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'.

Lots of Changes

The end of January left me incredibly happy. My surgeon had discontinued the Wound VAC and so it and all of the associated supplies were no longer taking up valuable space in my room. In addition, arrangements were made for the Clinitron At-Home bed to be picked up and for a new regular mattress to be delivered.

The nurses and my surgeon continued to treat the wound with the Calcium Alginate inside of the wound and then a dry dressing on top of it from mid January until the beginning of February when my surgeon said we were going to change what we were using. While I have pretty much always been a believer in the 'if it ain't broke, don't fix it' philosophy I have come to realize that sometimes even if a treatment is working it is important to change it up once in awhile. The human body will 'get used to' a type of treatment, sometimes to the extent that it will stop working. Therefore, it was in early February that my surgeon decided to switch me from the Calcium Alginate to something called Hydrofera Blue.

Hydrofera Blue is a synthetic sponge that is made of polyvinyl alcohol foam. The foam is infused with two pigments that protect against a wide spectrum of bacteria. The pigments, (Methylene Blue and Gentian Violet) give the hydrofera a blue-ish purple color. What is supposed to happen, is that any drainage will be pulled away from the wound bed, while the pigments are helping to prevent an infection.

The hydrofera blue was working to a certain extent, but after using it for two weeks, my surgeon wanted to change what we were doing again. He changed the orders back to the Prisma dressing with a foam dressing on top. Everything seemed to be going well, except that I was noticing more drainage. At that point, I wasn't sure if it was draining more because, something was wrong or because, the Prisma wasn't holding as much as the hydrofera was. I mentioned it to my nurses but they did not seem overly concerned about it. I was continuing to see my surgeon on a weekly basis throughout this period for the most part. When I woke up the day of my regular appointment with him, again I had a really weird feeling that something wasn't right. In fact, in the car on the way to the wound care center I kept telling my boyfriend that I had a feeling that the appointment wasn't going to go well.

When I got to the appointment I mentioned the excess drainage to the nurse and the surgeon. When the surgeon probed inside the wound I felt pain. I told him that it hurt and he basically asked if I knew what that meant. I did know, it meant that he was poking at bone and that I would need to have yet another surgery. Obviously, I was not at all pleased with this news but, I was not surprised by it due to my incredibly strong feeling. The surgeon told me that someone from his office would be in touch with me so that the surgery could be scheduled. In the meantime, he wanted me to go back to using the hydrofera blue.

When I got home, I called my visiting nurse and explained to her all that had gone on at my appointment and what the wound care orders were. It turns out, that we had run out of the hydrofera, so it would need to be ordered. In the meantime, I got in touch with the nurse at the wound care center and told her that we had Prisma and asked if that would be okay for a few days. I was told that it would be fine. We used the Prisma only until a few days before the surgery while we waited for the hydrofera to be delivered. The surgery was scheduled for the end of March.

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.

What is Going On

I had the PICC line in place for the next six weeks as I needed to have at least a six week course of the antibiotic. The nurse was right when she told me that after doing the medication a few times that it would end up being something that I wouldn't really need to think about doing. Meanwhile I was still using the Wound VAC.

Everything seemed to be going really well as I adjusted to using the PICC, I was at this point pretty much used to the Wound VAC so I was in a relatively decent place mentally. It was approximately the beginning of October at this point, I was told that as long as the Wound VAC was on and that I remembered not to lift anything weighing more than a gallon of milk that I could pretty much be up and out of bed once in awhile. While I was happy that I could be vertical more often I pretty much only allowed myself up when I deemed it absolutely necessary. I was beginning to get somewhat down about the entire situation and so I figured that if in essence grounding myself was going to make it heal that that was what I was going to do.

After I was on the antibiotics for the full six weeks my blood tests were showing that the infection had improved so much that the PICC line could be removed. The infectious disease doctor removed it, during one of my regular wound care appointments. Removing it was absolutely painless and it was completely out in less than a minute.

I would remain on the Wound VAC from that point all the way into the second week of January. In January I woke up to go to my normal wound care appointment with the surgeon, the car ride up was fine, except for the weird pit in my stomach. I had no evidence that anything was wrong other than just a weird feeling in my gut.

It turns out that when the surgeon started poking around he felt something sticking up in the center. He explained that he thought it was only a bone spur but that he wanted me to get an X-ray before I left. I was placed back on the wound VAC and sent down for the x-ray with the expectation that the surgeon would call me in a couple days to tell me everything was fine. I was hoping that a positive outlook was going to help. A couple of days later came the highly anticipated call, unfortunately the pictures were obstructed by a different unrelated procedure that I had when I was very young. The obstructed view meant that I would now need to undergo a Magnetic Resonance Imaging (MRI). I knew from past experience that while an MRI was going to be a loud and probably lengthy test I knew that it was completely painless so I went ahead and scheduled the test for after my wound care appointment the following week.

The test was done and I would end up getting the results during my visit with my surgeon. He said that he could not be positive that there was or was not an infection in the bone so he wanted to do another surgery so we would know what we were dealing with.