Uncertainty

“My one purpose in writing is simply to provide a catharsis for my own thoughts. They worry me until they are set forth in words.” ---
H.L. Mencken



I usually only turn to this blog after I have the facts from my surgeon or one of my nurses. Today, however, is going to be a bit different. I have been going through a lot surrounding my wound and so today please allow me to use this to express my frustrations, fears, worry and joys.


Last week I had an appointment with my surgeon at the wound care center. Being that the previous week my surgeon had proclaimed my wound healed and my visiting nurses also seemed to agree I went into the appointment kind of feeling like I was going to be discharged, yet still sort of unsure about the situation. As a matter of fact, when I went in the nurse asked me if we had “sealed the deal”, in other words if my wound was closed. I told her that I thought so, I also told her about the communication that my nurse had received that caused me to be so incredibly cautiously optimistic the week before. The nurse understood why I had felt confused and when I told her the depth that was mentioned in the communication she told me that she was virtually positive that it was in fact an outdated communication, which I shouldn’t worry about.


When my surgeon came in and examined my wound he also said that it was closed and I was done, I was marginally more excited than I had been the previous week but was not anywhere near feeling the joy I felt the first time my surgeon had discharged me. Before I left the nurse and surgeon took a picture of my wound to document that it was healed and also to show me what it looked like. I never got to actually see that picture though because we got talking about another pressing topic that was taking over my life.


Several months ago I discovered that my boyfriend had a wound on his lower leg. He being a typical guy minimized it and was not at all concerned. I was worried though so I tried to encourage him to get it checked out if not by a doctor, at least by my visiting nurse. He refused and because I did not want to nag him I let the subject drop but only temporarily. Eventually, he agreed to let my visiting nurse take a look at it, he said it was because I was genuinely concerned but I personally think he just wanted me off his case. My visiting nurse, with me also being her eyes was sort of treating his wound off the record for a couple of months and then it healed.


Unfortunately, his wound did not stay closed. My boyfriend asked me if my visiting nurse would be able to take a look at it again, because this time it was draining. My boyfriend’s schedule however, did not mesh with when she was coming over so last week when he was with me; I offered to look at it. He allowed me to do that and once I did, I almost immediately said that it needed to be seen. I also recovered the wound, using calcium alginate to absorb some of the drainage and then covered that with a Tegaderm foam adhesive dressing. I then asked my boyfriend if he wanted me to call the wound care center to ask if he could be seen, ideally while we were both there later that day for my appointment. They were unable to fit him in that day but could schedule him for a week later.


All of this was on my mind during my appointment, so some of the time we were talking about my boyfriend’s wound and what I had done after I had seen it that morning. I explained what I had seen and then how I had covered it again. The nurse seemed to think that what I had done sounded like the right thing to do until the surgeon could see it. I then halfway jokingly asked her if she would kindly get some of this information out of my head, that I could not stop thinking. She chuckled and said no.


My boyfriend and I left the wound care center and as we were leaving I told him that I had been discharged but that this time I was really not going to tell anyone other then him at least until my wound stayed closed for awhile. I had decided this because I will never forget the shattered look on my parents’ faces when I had to tell them that it had reopened after seven weeks of being fine. When we got to my house I asked my boyfriend if he would take a picture so that I could see being that I never got around to seeing the one from the wound care center. I saw the picture and although I was still only cautiously optimistic I was happy to see it closed. A few hours later my visiting nurse returned my phone call and I told her that my surgeon said I was done but that they couldn’t get rid of me that easily because I was going to go back the next week with my boyfriend. My nurse was thrilled to hear about me but was disappointed to hear that my boyfriend’s wound had opened up again. She then told me that getting it seen was a good idea, not so much because of the drainage but because their could be an underlying cause of the wound. That was precisely my thinking also.


Two days later my visiting nurse came to my house and she was so incredibly happy to hear that my wound had closed that as soon as she walked into my room she turned on the music that was on her iPhone. She had decided that this visit was going to be a fun one. I was okay with that but also told her that I am trying to temper my joy with some realistic expectations, purely because I had become so devastated when it had opened. When she looked at the wound she also said that it was closed and then took a picture so that I could see it. The picture that she showed me was different from the one my boyfriend had taken just two days earlier. I calmly asked her what the darker part was and that it looked open to me. She said that a tiny part of it was open but that it had absolutely no depth at all and was not draining so she was still calling it healed and even decided not to cover it. When she left my brain started spinning. I was upset that it looked different in just two days and had no idea what to think about her not covering it again.


I did not have any drainage that I noticed for the rest of that day so I was sort of hoping that my nurse was right and that I was needlessly being paranoid. I spent the majority of the day in bed, this time because I had come down with a cold.


The day after that was when I began to get a really weird feeling that my wound had opened even more and was potentially draining again. I did not feel anything at that point so I tried to convince myself that my mind was playing tricks on me and that I needed to relax, especially because my cold was really making me feel crummy. I lounged in bed and when I wasn’t sleeping I was trying to zone out to the television. The thing that did pop into my head periodically was my boyfriend’s wound. His appointment at the wound care center was four days away and I was interested to know what it was going to be like to be on the other side of a wound care situation. That evening when I got out of bed I noticed something that may have been drainage coming from my wound, I was a little nervous but did not do anything about it. Again, my mind had been playing tricks on me and I was trying to convince myself that while I had the right to be concerned after all I had been through, I should also try to think positively.

Thinking positively is apparently not something I am very good at doing though, especially when I am stressed. That night, while having dinner my mother said something really funny and I started laughing so hard that my eyes started watering. Once that happened though the tears brought on by laughter turned to tears of stress due to being unsure about my wound and being concerned about my boyfriend’s wound. Of course my parents have no idea that any of this is going on so I was crying with a goofy grin on my face. It wasn’t that big of a deal but it did make me feel like a fool. Here I was having dinner with my parents; one minute laughing at my mother and the next minute crying about the uncertainty that was happening in my life. I am pretty sure that I will have a visiting nurse at some point tomorrow who will hopefully be able to tell me if what I noticed was actually drainage or if I really do just need to calm down.

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.

Surgery Recovery and Miscommunication

After a quick stop at the pharmacy to pick up the prescription for pain meds, I went home to rest and await my visiting nurse who was scheduled for the next day. When my nurse came she asked how my pain level was and I explained that while I was sometimes uncomfortable, it was easily controlled with my prescription. She also, asked what exactly had been done in the operating room and what the orders were as far as the wound care itself was concerned. I explained to her that during the surgery the wound had been cleaned up back to healthy bone and then filled with antibiotic seeds and then a type of Prisma collagen was placed inside the wound. The collagen that was inside the wound and the antibiotic seeds would all start to be absorbed by my body as such the only thing that my nurse would need to do for the next few visits, would be to change the outer dressing and monitor the amount of drainage.


I saw my surgeon at the wound care center about a week later. During which time he added Promogran (another collagen) to the wound and explained to me that he still only wanted my visiting nurses to change the outer dressing and that he wanted to see me weekly. He needed to see me weekly so that he himself could add the collagen after it had been given a chance to be absorbed. That way not everyone was poking around inside the wound, therefore hopefully giving it the best chance to heal.


Following those instructions was going very well and my surgeon seemed pleased with the progress of the wound. A few weeks later, my surgeon explained that he needed me to skip a week with him so as I was leaving a made an appointment for two weeks later. When I next saw my visiting nurse I explained to her that I was skipping a week at the wound care center but that I had completely forgotten to ask what should be done about the collagen that was to be replenished weekly. My nurse told me that at that point it was fine because it had only been a couple days and we had time to get in touch with the wound care center before it would need to be changed anyway.


I called the wound care center and spoke with the nurse that had last been in the room during a visit with the surgeon to ask her what she thought we should do during the time I would not be seen by my surgeon. The nurse that I spoke with was one that although I do not have a problem with her per say, I do not feel like her and I communicate very well. When I asked her what I should do after the collagen was in for a week all she really said was that it “dissolves into the wound” I explained that I knew that already and then asked in what I thought was a different way that would maybe get me an answer. I even pulled out the big guns and used the word “replenish” in the sense of “what should we use to replenish the amount of collagen once this has been in all week”. The nurse continued to just tell me that my body absorbs the collagen but never really told me what to add once it had been in for the week.


When my visiting nurse came I explained to her that I had tried to get us an answer but hadn’t been very successful. She was frustrated by the lack of information but was mostly just amused that I had asked several different ways and still the nurse was unable to at the least reply with “I do not know, let me speak with the doctor and get back to you”. I was also amused so I laughed about it, with the intention of calling my surgeon a few days later for a straight answer. A few days later I found myself calling my surgeon directly so that I could get further instructions. I had no problem calling being that this was a completely legitimate question, however, I did sort of feel like a fool for not having asked him before I had left. When I spoke with my surgeon and asked my question he then asked me what supplies I had in my wound supplies box so that hopefully he could just pick something I already had. He was able to suggest using another kind of collagen and told me that kind should be changed a few times a week so the nurses could start filling the wound with that and he would see me the following week.