Cautious Optimism

I’m sorry that this post has been delayed so long. Things got a little absurd and I needed time to process before they came out in a jumbled mess of emotional chaos. I think I am at the point where I can write somewhat coherently so here we go.



My visiting nurses continued to fill the wound with collagen of one form or another for several weeks after the surgery. It seemed to me that the wound was progressing, slowly but still moving forward. During a visit to the wound care center my surgeon mentioned maybe wanting us to change what we were using, just to jumpstart the healing again. He thought that we should maybe switch back to using the Hydrofera Blue. That was when he asked about how much drainage we were noticing and I told him that it was still heavily draining. At that point my surgeon decided not to put in the Hydrofera Blue because he felt that it might just plug the drainage in the wound and not let it escape. I agreed and went home with instructions to continue using Collagen inside of the wound and the same Tegaderm foam dressing on top of it that we had been using.


The visiting nurses and I continued following my surgeon’s instructions and we were seeing some progress. I was happy to hear that things were going well but was still taking most of the good news with cautious optimism, with an emphasis on the cautious. In the beginning of December I went to my regular appointment at the wound care center and when my surgeon probed inside the wound to see what the depth was he was very happy. Actually, it was one of the few times when I had heard him really “up” about how it was doing. After I laughed about his reaction he told me to just keep doing what we were doing and to come back in two weeks so he could assess my wound again.


During the couple weeks I was waiting to go back to the wound care center my nurses started to become more and more pleased with my wound. The drainage was starting to decrease and the depth started to become less. The next time I saw my surgeon he was also pleased and told me to keep going with the collagen and see him again a few weeks later.


After about a week I mentioned to one of my visiting nurses that I had been thinking. Me thinking? Wait a minute; this could either be really good or really bad. See, as I have said wound care was continuing to take over my life and once in awhile I found myself unable to get wound care out of my head. I mentioned to her that my surgeon was at one point considering changing to Hydrofera Blue but he was concerned about having too much drainage. Based on the fact that we were noticing the drainage had decreased and had been on the collagen for approximately nine weeks I was thinking about mentioning to him that maybe that point would be a good time to switch what we were doing. My nurse agreed with my thinking and told me that it couldn’t hurt to bring it up with him at the following visit.


A couple of days later I had another visit from a nurse, this time it wasn’t the one that I was super comfortable with, but the one that I had been taking almost everything she said with a grain of salt. I mentioned my idea to her and she also told me that mentioning it wouldn’t be a bad idea. That is also when she told me that she had received a communication from the wound care center about my wound. That sort of threw me for a loop because the nurses rarely if ever get communications about me. She then proceeded to tell me that the communication said that my wound had some depth that she was unaware of. What had happened by this point was that the opening of my wound had become so small, my visiting nurses were having trouble getting any instruments inside of it to measure the depth. Visually they thought it was doing well but they couldn’t really be sure. The depth that she told me seemed that it had to have been completely outdated but there was no way to be sure at that point because she didn’t have a copy with her to check the dates. I felt that the communication was outdated because I am all but certain that the number was not one that would have caused my surgeon’s excitement a month earlier. I was going to the wound care center two days later so I intended to mention both the weird measurement communication and my idea to switch to the Hydrofera Blue while I was there.


When I got to the wound care center the nurse took the dressing off and then didn’t really say much of anything. I also, didn’t bother to ask because I knew my surgeon would be in shortly. When my surgeon came in, before I had really even gotten a chance to tell him my idea about changing to Hydrofera Blue or to ask about the strange communication my nurse had received, he came over and examined my wound. Then he said something completely unexpected, “I’m calling that healed”. By then, my surgeon came over to the other side of the bed so he could actually see my face. I have to say I don’t think I gave him the reaction that he was exactly looking for because well frankly, I did not believe it. He asked me if it was something the nurses said that had me feeling a little unsure and I said yes, but before I really got to tell him what exactly she said, we got talking about other things. I think I was so thrown off by that news because I could not get the strange measurement from the communication that my visiting nurse had told me about out of my head.


My surgeon then told me that he wanted us to lay a piece of calcium alginate over top of the wound and then put a dressing on top of it, “just to absorb any drainage and to provide some more protection for it”. He told me to come back a couple of weeks later so that he could be sure. Due to a scheduling conflict I told him that two weeks was not an option so he could choose either seeing me the following week or to wait and see me in three weeks. He then said to come back the next week.


I left the appointment unsure how to feel. While I was happy to hear that my wound was supposedly closed I was also thinking about the times I had heard before that it was closed. The previous times I had gotten very happy very quickly and then it had reopened so this time around I was a little hesitant to get excited. Being that I was so cautious I decided to really only tell my boyfriend what my surgeon had said. I decided that because before when I had told everyone and their mother about it being closed it had reopened and the look on those people’s faces was too much for me to handle so I was going to keep quiet about it for awhile, this time.



Two days later when a visiting nurse came I explained to her what all had gone on at the appointment and what the wound care orders had been changed to. I also, told her that while I fully trust my surgeon while I believe HIM, I did not necessarily believe IT when he told me. She laughed and said that it sort of made sense to her, if that was how I “wanted to spin it”. My nurse then examined the wound and she said that it was doing incredibly well, that it had no drainage but that one part of it may still have been open. I was neither surprised nor upset upon hearing that. Mostly because I just didn’t get the “it’s done” feeling. She then dressed the wound and told me that the other nurse would be out to see me in a few days.



The next nurse that came was the one that I do trust and that I have always had a close relationship with so when she came in and I told her what was going on she had said that she would tell me what she thought. When she looked at it, she said that it is closed. I believed her but still was hesitant, she then said that she poked at it rather aggressively and that nothing happened. My response to this news was “eh, ok, if you say so; but I’m still not telling anyone yet. She laughed but told me that she understood why I was being so incredibly cautious this time around. Before she left, she asked me to call her after I see my surgeon to give her an update, which just happens to be tomorrow. Stay tuned.

You Have Got to be Kidding Me, My Bubble Burst

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.

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.