The following morning I was brought down to have the surgery to figure out just how deep this wound really was. I was not thrilled with the prospect of having surgery but this was by no means the first time I had been in an operating room, so I sort of knew what to expect, or so I thought.
Typically before a surgery, the doctor will come in and talk to you and answer any last minute questions that you may have. I was just outside the operating room and had met a couple of the nurses that would be with me during the procedure and also the anestethesiologist. It was getting closer and closer to the time they were going to bring me into the operating room and the surgeon still hadn't shown up to speak with me. Finally, I requested to see her before the procedure. Talk about weird, never in all of the surgeries I've had, have I ever had to ask to see a doctor prior to a procedure. Word got to the doctor that I wanted to see her and she showed up. When she appeared it was like she was there as a favor to me. I found that to be completely unprofessional and it set off another set of warning bells, though I didn't choose to open my mouth and say I had a problem with it at all.
We went on with the procedure as scheduled and I woke up about an hour later, feeling spectacular. I was brought back to my room and was given lunch and was just told to stay on my side as much as possible. Although, the wound vac was supposed to be set up during the surgery itself, something had gotten screwed up with its delivery and so we would have to do that the next day in my room. I was okay with that being that I was told that hooking up the vac shouldn't be an uncomfortable experience.
Later, that afternoon the surgeon came to see how I was feeling and also to tell me that the wound wasn't as deep as she had first suspected. To say that I was relieved would be an understatement. That is when she told me that she wanted me to get a special mattress to sleep on. I freaked out, I am one that loves her sleep and to tell me that the way I was used to sleeping was going to have to change did not go over well in the least. She chose that moment to sit down and actually talk to me face to face, for the first time ever. She explained that the best way for the wound to heal would be if along with the vac for me to agree to get an alternating pressure mattress. Which while keeping pressure off the wound would also help to increase circulation. She explained that the special mattress wouldn't need to be forever just until the wound healed, I reluctantly agreed.
The following day, the wound vac was delivered and a bunch of nurses came into the room to put it on and also to explain to me and my family members what to do if it started making alarm noises once I was discharged. Putting it on, although time consuming, was not painful at all so again I wasn't too worried about having to use it. "Temporarily" was the word that I kept repeating to myself every time I remotely got upset about either the vac or the new mattress that by that point was already on the way to my house and being set up.
I was discharged from the hospital the following afternoon. I thought okay at least we now know that the wound is not as deep as we originally thought and now with the wound vac on it and a special mattress that it would heal relatively soon and I could move on with my life. When I got home and saw the monstrosity that was taking over my room I nearly lost my mind. I have a relatively small bedroom and the bed, oh yes it's a bed not just a mattress. was taking up a ton more space than my regular full sized bed had used before. I climbed onto the bed and as I did I immediately noticed that it was heated. I was not at all pleased with this information being that it was probably August at this point. The other thing that happened when I first climbed from my wheelchair to the bed was that the wound vac chose that moment to start alarming. If only that would be the one time my family and I would hear that sound.
Monday, January 30, 2012
Friday, January 27, 2012
Meeting the Waste of Time
I feel that the wound was already infected before that one nurse decided to put the different dressing on and that by no one seeing it for a few days it allowed the infection to fester. Leaving me with a huge wound that had actually turned black.
As I had been instructed, I went to the wound care center the following week so that I could begin seeing the doctor that was supposedly going to heal the wound. The doctor came into the exam room and before she had even really introduced herself to me she began working on the wound, continuing to cut away the dead tissue. Her failure to introduce herself was the event that set off the first alarm bell in my head. While I understand that doctors are busy people I do not feel that it is in any way appropriate for a doctor not to take the thirty seconds and introduce themselves to a new patient.
While the doctor was lookiing at the wound is when she started asking questions regarding how long I had had the wound and what we were doing for it. I answered her questions and then was sent for an x-ray to make sure the infection hadn't spread into the bone. While I was waiting for the x-ray I was hoping that it hadn't progressed that deeply but something in my head told me different. The x-rays were inconclusive, which meant that she couldn't tell if bone was involved or not. If bone were involved without us knowing it would have been disastrous. Being that she was unable to tell through x-rays that meant she would have to bring me to the Operating Room to find out.
The surgery was scheduled for a few days later. I was admitted to the hospital the day before my surgery was to take place. During that time I saw a wound care nurse that suggested that something called a Wound Vac be put on the wound. When she first told me that I was sort of shocked, 'I'm sorry you want to hook me up to a machine and let the machine make it better,' I thought. Instead of panicking at that point, my somewhat of a nerd brain took over and I started asking for literature about this 'Vac' that they wanted to hook me up to. The wound care nurse gave me a large binder with a ton of information in it. When a family member came in to visit me later that afternoon he found me studying. After I had finished reading all of the literature I was all but certain that while this device may not be the most pleasant of experiences that it would probably be effective. At this point the little voice in my head that had been telling me that this doctor may not be a good match for me got louder. I requested a second opinion from a doctor that I trusted and had seen previously for various issues.
When he came in and looked at the wound he told me that yes surgery was going to be what I should do. Surprisingly I was okay with that answer. That is when I asked him if he would do it instead of 'my surgeon'. He said no, that he wasn't really into wound care and that I should stick to the surgeon I was already working with. I agreed, though somewhat hesitantly.
As I had been instructed, I went to the wound care center the following week so that I could begin seeing the doctor that was supposedly going to heal the wound. The doctor came into the exam room and before she had even really introduced herself to me she began working on the wound, continuing to cut away the dead tissue. Her failure to introduce herself was the event that set off the first alarm bell in my head. While I understand that doctors are busy people I do not feel that it is in any way appropriate for a doctor not to take the thirty seconds and introduce themselves to a new patient.
While the doctor was lookiing at the wound is when she started asking questions regarding how long I had had the wound and what we were doing for it. I answered her questions and then was sent for an x-ray to make sure the infection hadn't spread into the bone. While I was waiting for the x-ray I was hoping that it hadn't progressed that deeply but something in my head told me different. The x-rays were inconclusive, which meant that she couldn't tell if bone was involved or not. If bone were involved without us knowing it would have been disastrous. Being that she was unable to tell through x-rays that meant she would have to bring me to the Operating Room to find out.
The surgery was scheduled for a few days later. I was admitted to the hospital the day before my surgery was to take place. During that time I saw a wound care nurse that suggested that something called a Wound Vac be put on the wound. When she first told me that I was sort of shocked, 'I'm sorry you want to hook me up to a machine and let the machine make it better,' I thought. Instead of panicking at that point, my somewhat of a nerd brain took over and I started asking for literature about this 'Vac' that they wanted to hook me up to. The wound care nurse gave me a large binder with a ton of information in it. When a family member came in to visit me later that afternoon he found me studying. After I had finished reading all of the literature I was all but certain that while this device may not be the most pleasant of experiences that it would probably be effective. At this point the little voice in my head that had been telling me that this doctor may not be a good match for me got louder. I requested a second opinion from a doctor that I trusted and had seen previously for various issues.
When he came in and looked at the wound he told me that yes surgery was going to be what I should do. Surprisingly I was okay with that answer. That is when I asked him if he would do it instead of 'my surgeon'. He said no, that he wasn't really into wound care and that I should stick to the surgeon I was already working with. I agreed, though somewhat hesitantly.
Wednesday, January 25, 2012
It's All Getting Ugly
The worst decision I could have made was allowing that one nurse to change my woundcare. She said we were going to do something different and I should have insisted on another opinion when I first heard those warning bells.
We had been changing the wound dressings three times a week and it was going very well. Until that one nurse decided that being that it was almost done we would change to a type of dressing that was to be left on for a week. She basically told me that when she came back a week later that I'd be all but healed. It did not happen like she said it would.
To begin with, the dressing only stayed on for three or four days before it fell off. When it fell off I noticed 'that smell' the 'sour milk, something is really wrong here smell' that anyone that has been around an infected wound knows instantly. Of course I called the agency and told them eventhough I wasn't scheduled for a few days that I required a visit inmediatly. It being a Saturday the on-call nurse was one I had never met before, but at that point I didn't particularly care. She came and put on a new dressing and said she would be back the following day to change it again. Finally, I thought someone that knows what she's doing.
When she came back the following day to change the dressing she explained that it looked 'different' from even the previous day. She covered the wound and told me that she was going to call my doctor's office when she left and that I could expect a call back from her. She explained that yes the wound was infected and that she thought it needed to be seen by a doctor ASAP.
The nurse called me shortly after she left and told me that the doctor wanted me to go to the Emergency Room and to get the infection disease doctors to look at me. I went to the emergency room with an enormous pit in my stomach, very worried about what was happening. The infection doctors at the emergency room looked at the wound, took cultures and had me admitted so that it could be detemined which antibiotic they should put me on.
I was placed on antibiotics and two days later they were ready to discharge me. When the patient coordinator came into my room to set up all of the home nursing care I would need, I finally decided to speak up about that one nurse that I never wanted to see ever again. The patient coordinator listened to my story and completely understood my concerns. She made arrangements for a different company to take over my homecare. I was relieved that it would be a different company this time around, yet was also worried that something would go horribly wrong again.
In addition to being discharged to homecare I was instructed to start seeing a wound care center in a neighboring town. The first visit to the wound care center wasn't really a big deal, other than the doctor I saw wouldn't be the one that would be treating me regularly. He was just filling in while that doctor was dealing with an emergency. All he did at the first appointment was to start cutting away all of the infected tissue. As he was cutting it away I was sort of surprised to notice that I was in no pain what so ever. Of course dead tissue has no feeling so I suppose that makes sense. The other thing that struck me was the horrendous odor that was coming from the wound. It smelled like burning rotten flesh which of course makes sense cause for all intents and purposes that's exactly what it was. The doctor told me to go back the following week so that the doctor that was going to see me regularly could do her evaluation.
We had been changing the wound dressings three times a week and it was going very well. Until that one nurse decided that being that it was almost done we would change to a type of dressing that was to be left on for a week. She basically told me that when she came back a week later that I'd be all but healed. It did not happen like she said it would.
To begin with, the dressing only stayed on for three or four days before it fell off. When it fell off I noticed 'that smell' the 'sour milk, something is really wrong here smell' that anyone that has been around an infected wound knows instantly. Of course I called the agency and told them eventhough I wasn't scheduled for a few days that I required a visit inmediatly. It being a Saturday the on-call nurse was one I had never met before, but at that point I didn't particularly care. She came and put on a new dressing and said she would be back the following day to change it again. Finally, I thought someone that knows what she's doing.
When she came back the following day to change the dressing she explained that it looked 'different' from even the previous day. She covered the wound and told me that she was going to call my doctor's office when she left and that I could expect a call back from her. She explained that yes the wound was infected and that she thought it needed to be seen by a doctor ASAP.
The nurse called me shortly after she left and told me that the doctor wanted me to go to the Emergency Room and to get the infection disease doctors to look at me. I went to the emergency room with an enormous pit in my stomach, very worried about what was happening. The infection doctors at the emergency room looked at the wound, took cultures and had me admitted so that it could be detemined which antibiotic they should put me on.
I was placed on antibiotics and two days later they were ready to discharge me. When the patient coordinator came into my room to set up all of the home nursing care I would need, I finally decided to speak up about that one nurse that I never wanted to see ever again. The patient coordinator listened to my story and completely understood my concerns. She made arrangements for a different company to take over my homecare. I was relieved that it would be a different company this time around, yet was also worried that something would go horribly wrong again.
In addition to being discharged to homecare I was instructed to start seeing a wound care center in a neighboring town. The first visit to the wound care center wasn't really a big deal, other than the doctor I saw wouldn't be the one that would be treating me regularly. He was just filling in while that doctor was dealing with an emergency. All he did at the first appointment was to start cutting away all of the infected tissue. As he was cutting it away I was sort of surprised to notice that I was in no pain what so ever. Of course dead tissue has no feeling so I suppose that makes sense. The other thing that struck me was the horrendous odor that was coming from the wound. It smelled like burning rotten flesh which of course makes sense cause for all intents and purposes that's exactly what it was. The doctor told me to go back the following week so that the doctor that was going to see me regularly could do her evaluation.
Monday, January 23, 2012
Alarm Bells in my Head
From February 18, 2009 until about April 1, 2009 everything was going well. I was once again living my life without a wound dictating when I could go out. I was enjoying time with my friends and family and I thought that pressure sores, wound care and bed rest were things of the past.
As I had vowed to myself, I was no longer sitting in the same positions for long periods of time. I was also not using my bed for anything other than sleeping, doing everything I could to prevent another wound from forming. Despite my best efforts, another wound was discovered on April 1, 2009. Yep, on April Fools Day I found myself in my doctor's office being told that it had happened again and that I would need to do the same thing I had just done three months prior.
That meant that just as I was getting my life back to normal I yet again had to go on bed rest and have visiting nurses in my home on a regular basis. While I was very upset that this had happened again I wasn't too worried about it being that the first one had healed rather quickly. When my doctor asked me which nursing agency had handled my case initially I told her without hesitation. We called them and made arrangements for them to resume my care.
That wound started out rather small and we initially were just doing the same type of dressings that had healed me previously. Despite that it was working and the wound was getting smaller and smaller one of the nurses decided to change our methods.
The nurse that decided to change what we were doing, was one that upon meeting her for the very first time gave me a weird feeling. While she was fine at changing the wound dressings I found her personality to kind of conflict with mine. While I don't mind it when people talk to me about their personal business I did sort of feel more like her psychologist rather than her patient. Instead of listening to those alarm bells that were beginning to ring in my head I continued to allow that nurse to be the one that was generally in charge of my care. I would later realize that would be one of the worst decisions of my life.
As I had vowed to myself, I was no longer sitting in the same positions for long periods of time. I was also not using my bed for anything other than sleeping, doing everything I could to prevent another wound from forming. Despite my best efforts, another wound was discovered on April 1, 2009. Yep, on April Fools Day I found myself in my doctor's office being told that it had happened again and that I would need to do the same thing I had just done three months prior.
That meant that just as I was getting my life back to normal I yet again had to go on bed rest and have visiting nurses in my home on a regular basis. While I was very upset that this had happened again I wasn't too worried about it being that the first one had healed rather quickly. When my doctor asked me which nursing agency had handled my case initially I told her without hesitation. We called them and made arrangements for them to resume my care.
That wound started out rather small and we initially were just doing the same type of dressings that had healed me previously. Despite that it was working and the wound was getting smaller and smaller one of the nurses decided to change our methods.
The nurse that decided to change what we were doing, was one that upon meeting her for the very first time gave me a weird feeling. While she was fine at changing the wound dressings I found her personality to kind of conflict with mine. While I don't mind it when people talk to me about their personal business I did sort of feel more like her psychologist rather than her patient. Instead of listening to those alarm bells that were beginning to ring in my head I continued to allow that nurse to be the one that was generally in charge of my care. I would later realize that would be one of the worst decisions of my life.
Thursday, January 19, 2012
The Beginning of the Journey
Let me bring you back to about this time of January 2009. In January of 2009 I was getting along relatively well with my family and was awaiting the birth of my first niece. Happily enjoying the new laptop that I had gotten for Christmas. I mention the laptop because my using it was one of the contributing factors to a medical issue that was the event forced me to trust my gut feelings more often.
As an individual with a neural tube defect I had been told since I was a young child that I would need to regularly change positions and that I should also get in the habit of checking my body for sores. I spent the weeks after Christmas sitting on my bed playing with my laptop and not changing my position nearly as much as I should have.
In mid January I realized that although I wasn't in pain, due to decreased sensation, I had developed a pressure sore. I immediately went to the doctor and was told that not only was I going to need skilled nursing care at my home that really regardless of what the doctors or nurses did that it wouldn't heal unless I took the responsibility to stay off the wound as much as possible. Now is probably a good time to mention that I am wheelchair bound and that the wound was near my coccyx. Thus, I had to switch from being relatively active to basically being stuck in a bed forced to lay on my sides and stomach.
It took about a month for my wound to completely heal. That month felt incredibly long. Being stuck at home in bed left me feeling isolated and depression kept rearing it's ugly head. I tried to stay as positive as possible and was encouraged by my nurses that the wound was closing nicely and that it would get better if I just held up my end of the bargain and stayed off of it. I did hold up my end of the deal and exactly two days before my niece was born I was given medical clearance to begin living my life again.
I was thrilled with that news especially once I got the phone call to go to the hospital to meet my new niece. As I was holding her for the first time I made a vow to myself to do all that I could to prevent myself from having to experience anything like that again. Sadly, that was not in the cards for me.
As an individual with a neural tube defect I had been told since I was a young child that I would need to regularly change positions and that I should also get in the habit of checking my body for sores. I spent the weeks after Christmas sitting on my bed playing with my laptop and not changing my position nearly as much as I should have.
In mid January I realized that although I wasn't in pain, due to decreased sensation, I had developed a pressure sore. I immediately went to the doctor and was told that not only was I going to need skilled nursing care at my home that really regardless of what the doctors or nurses did that it wouldn't heal unless I took the responsibility to stay off the wound as much as possible. Now is probably a good time to mention that I am wheelchair bound and that the wound was near my coccyx. Thus, I had to switch from being relatively active to basically being stuck in a bed forced to lay on my sides and stomach.
It took about a month for my wound to completely heal. That month felt incredibly long. Being stuck at home in bed left me feeling isolated and depression kept rearing it's ugly head. I tried to stay as positive as possible and was encouraged by my nurses that the wound was closing nicely and that it would get better if I just held up my end of the bargain and stayed off of it. I did hold up my end of the deal and exactly two days before my niece was born I was given medical clearance to begin living my life again.
I was thrilled with that news especially once I got the phone call to go to the hospital to meet my new niece. As I was holding her for the first time I made a vow to myself to do all that I could to prevent myself from having to experience anything like that again. Sadly, that was not in the cards for me.
Background
I am in my late twenties and I have always believed that I've generally had a good sense of intuition. The point of this blog is to explore the recent journey that I've had to go on in order to really convince myself that usually my gut IS right and that I should have started listening to it a very long time ago.
A Little About Me- As I said I am in my late twenties. I was born with a neural tube defect. As such I have had to deal with various health issues throughout my life. Luckily nothing major had happened. Until the winter of 2009. Thats when this journey began. :)
A Little About Me- As I said I am in my late twenties. I was born with a neural tube defect. As such I have had to deal with various health issues throughout my life. Luckily nothing major had happened. Until the winter of 2009. Thats when this journey began. :)
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