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Jennifer's Survivor Story
 
On October 11th, 2000, I delivered my son via C-section. It was a planned cesarean for I had gestational diabetes, and they knew from the ultrasounds that my son was going to be on the large size. My son was delivered at Backus Hospital in Norwich, CT (coincidentally, the same place that Jackie was diagnosed with NF). He was fabulous at birth, but developed apneatic episodes, and transferred to Yale-New Haven Hospital the next day.

I was released on Friday the 13th, and immediately starting traveling the hour back and forth to see him. I was taking it easy, I even broke down and let my mom wheel me around in a wheelchair most of the time. Sunday night, my incision starting getting a little bit of a burning sensation. I asked my mom to check it and she didn't like the way the right side looked. I made an appointment the following day to get it checked. My OBY looked at it, and said that it looked really good, so they removed my staples. I had neglected to tell them that I had been running a low-grade temperature all weekend. I didn't see the relevance because I was tired, and I had just had surgery. Luckily, we were able to bring our son home later that evening.

Tuesday, even though I was taking Motrin, I started to run around a 101 degree temp. I called and spoke with one of the partners in my OBY group, and he told me to get back in to get checked the next morning. At this point and time my incision was feeling about the same, maybe a little bit more tender, but nothing severe.

Wednesday, our son had his 48 hour recheck, and back into my OBY office I went. By this time I showed clear signs of infection. My temp wasn't too bad when they checked it there, it did fluctuate quite a bit during the day. The middle of my incision was hot to the touch, red, and inflamed. Augmentin and a recheck in two days were prescribed.

Going into the evening time, I developed a prominent pocket of fluid about three inches wide and about 1 1/2 inches high in the middle of my incision. I was putting warm soaks on it, and my mom blew cool air with a hair dryer on it, but nothing was really bringing any relief to the pain and pressure I was feeling.

Throughout the day on Thursday, the pocket of fluid grew to the length of my incision, and up to my belly button. I'm a heavy woman now, so it covered a good-sized area. I finally got up the guts to try to look at it in the mirror. It was so hot to touch, and heavy that I didn't even manage to see the incision itself. What I was able to see were a couple of red, almost purple areas. They were the color of a blood blister. I started to panic a little, and didn't even try to explore any further.

My mom was up to check on me a few minutes afterwards. I've been told that the areas that I saw were a bit bigger than what I had originally thought. I talked to my OBY, and she left it up to me whether I wanted to keep my appointment for the next day, or meet her in the ER. I was told by my mom that I was going to ER (mother's intuition, right?).

Off to the ER. Walking felt almost unbearable. I think people think I was kidding when I said that it felt heavier than the pregnancy itself did. Between the weight and the burning I couldn't stand to be on my feet, and I had to make sure I didn't "pinch" my belly between my legs when I sat down. I was seen at the triage station and my vitals and temperature (98.9) were fine.

My OBY examined me, but she wasn't too concerned about the "blood-spots" at the time. She tried poking at a couple spots in the incision to try to drain some fluid, but nothing gave. It was painful just to have a hand lay on that area, so it was quite excruciating to have that bit of poking done. She left to get an ultrasound machine, and in that time I started to shiver violently. The nurse remarked that it was the warmest room in the ER, and proceeded to take my temp.. 102.8. When my doctor heard that upon her return, I was told without delay that I was not to go home that night.

She started to do an ultrasound, but could not determine what was actually fluid from the tissue. From there I was sent to ultrasound. I honestly do not remember exactly what they said about the results.

So, I was admitted, had all sorts of blood cultures taken, IV started, all that good stuff. Through the night, I maintained just below a 103 temp. I couldn't have any fever reducers because they wanted to see how high my temp really was.

Friday morning I was given Tylenol, and my temp went down to low-grade. By midday my incision started to leak a brownish-yellow fluid with an odor I cannot describe. I was seen by Dr. Moderazo from CDC, and was put on more antibiotics. I really didn't have any answers yet other than that we had to wait until the next day to get the results from the cultures. I kind of got to feeling like a pin-cushion really quick with all the blood they were taking.

In the afternoon I started to run a temp in the 104 area. Strangely enough, the only discomfort that I experienced was from my abdomen. The nurses and doctors kept commenting that if it weren't for the thermometer and my red cheeks, they wouldn't have a clue that I was running such a high temp.

My husband was finally able to get to the hospital in the evening. While he was there, he asked me if he was going to lose me. I told him no way, people get infections all the time.

During the night I was put on a cooling pad, and my temperature dropped a little. In the morning, my temp went back up, and the cooling pad was turned on again. I was on the cooling pad for a few hours with no break in temperature. I had just eaten lunch when a surgeon came into my room and told me that I was going to be going into surgery. I was told that I had a flesh-eating bacteria, and that I had to have tissue removed, and he explained the debridement procedure. I was fine until he told me that the wound was going to be left open. It more or less bothered me because I had never heard of a wound being left open. I had to wait until 6:30 that evening to have the surgery because of lunch.

I did manage to keep a sense of humor about me. Honestly, I didn't realize how much jeopardy my health was in. That probably made it easier for me to absorb everything. I did tell the nurse on the way down to the OR that I had gone 24 years without having major surgery, now I was having two within two weeks. I told her that I was NOT going to make it a weekly thing. She laughed a little.

The surgery went well, the only drawback was that I started to wake up a little earlier than I was supposed to and started panicking when I found myself choking on the air tube going down my throat. I finally forced myself to relax. I am amazed that your lungs will automatically breathe with it while you are "sleeping", but when you are aware of it how it is a totally different story.

My mom, dad and one of my uncles were waiting for me in the hall while I was being wheeled out of recovery. My husband had been at the hospital for a majority of the day, so I sent him out to supper with one of his friends. Humor always seems to be best medicine in my family, along with my foggy head from the anesthesia, I was doing a pretty good job keeping my family light-hearted. I can't tell you now what was said, but I do remember I was a funny lady.

I wasn't bothered to much at the idea of being packed with big rolls of gauze until it was time to get up and get washed or go to the bathroom. To get out of bed in general. I would find myself holding onto my front for dear life like my insides were about to spill out.

My first dressing change was bearable. I was amazed at how much packing was pulled out of my wound. It ended up being a hole about 4 or 5 inches wide, about 8 inches long, and 6 or 7 inches deep. Like I mentioned before, I'm a heavy woman, and he had to remove from the bottom of my belly all the way to my muscle wall.

I was released on Tuesday with my temp back to normal, antibiotics, pain meds, and a visiting nurse twice a day. I stayed at my mom's so I wouldn't have to struggle with stairs every time I needed the bathroom. All of the family helped out so I was not alone with the kids, and I could get plenty of rest. I healed rather quickly, and discontinued the nurses' visits in the middle of November. I had my six-week postpartum visit, and recheck on my wound on the same day. I spoke with my OBY on the phone later in the day, and she had just spoken with the surgeon. He told her that he was amazed at how well I had healed at that point.

My wound at that time was only surface deep, and he fair warned me that that was going to be the longest part of the healing. Was he ever right, it just seemed to drag on and on for the little bit. He put silver nitrate on what was left of the wound for three of my last appointments. In the middle of January I was finally released from his care with only a hair of the wound left. It is now fully healed, and I have made a full recovery. I never knew how tender a scar could be, but I can deal with it well enough knowing that I am here to watch my daughter and son grow up. I know I am extremely fortunate that a portion of my abdomen was the extent of my loss.


Jennifer
allt42h@yahoo.com or jlhoke76@hotmail.com
Norwich, CT
October 2000
 

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