Kaylee was four and a half months old when she awoke one morning with a low grade fever (100.00 degrees). She was fussy and pulling at her right ear. We thought she had an ear infection, but also noted a pimple with a whitehead on her chin which she developed three days earlier. The pimple had come to a head and popped, but the whitehead reappeared on the pimple. Kaylee went to the pediatrician the same day (Tuesday) at 11:00 a.m., to have her ears checked. The pediatrician examined her and said she had an ear infection, prescribed antibiotics and Tylenol/motrin. I pointed out the pimple but the doctor did not seemed concerned with that. Kaylee received her first dose of antibiotic that day at 1:00 p.m., and she had motrin. She continued to fuss and not be herself. I also noted that the area around the pimple now looked somewhat inflamed (red and puffy).

I figured that the ear infection and the pimple were both bothering her, but needed to give the antibiotic time to work. However, by 4:30 pm, Kaylee felt very hot to the touch and continued to fuss and whine. I checked her temp under the armpit and it registered 104.7 degrees. I placed a call to the pediatrician as she seemed to be getting worse not better, and the motrin and antibiotics did not seem to be helping at all. While we awaited the return call fro the pediatrician (it was after hours) we decided to head to children's hospital in Boston, and I put the house phone on call forward to my cell so we could start the 35 minute or so ride to the hospital. Half way to the hospital the doctor called and after describing what had been going on all day, she agreed that Kaylee should go to Children's Hospital.

Arriving at Children's emergency room, the doctor there after examining Kaylee was more concerned about her pimple and not an ear infection. Kaylee continued to have a high fever, her heart rate was registering about 204 on the monitor, she was still crying and obviously uncomfortable. One further note was that Kaylee was finding it harder to suck on her bottle because of the close location of the pimple to her lips. The E.R. Doctor called in a consult fro ORL who lanced the pimple with scissors, and then proceeded to try and drain it. There was no drainage, and that caused concern to the ORL doctor. He admitted Kaylee for observation. Kaylee did not receive pain medication until about 2:00 a.m., (in hindsight I wish we had advocated for it earlier but we didn't know at that time what we were dealing with) and we were put into a room about 4:00 a.m. We slept little, but Kaylee was now resting more comfortably due to the pain medication.

When we awoke, we noticed that all under Kaylee's chin and her neck, and the sides of her face were completely swollen. The nurses called ORL back in,and the same doctor who saw her in the E.R. came back again. He examined her and came back with a team that included an older ORL doctor to examine her. They concluded that Kaylee had necrotizing fasciitis. We did not know what that was and it was explained that it was known as flesh eating bacteria and that this was a life threatening situation, and that Kaylee may not live as they could not identify the type of bacteria until cultures were grown, but that would take 3-5 days. In the interim, they threw the kitchen sink at her as far as giving her antibiotics because they didn't know what bacteria was invading her; they needed to get her on a broad spectrum of antibiotics in the hopes that one of the antibiotics that they are using is the right one, get her into surgery immediately for debridement of the infected dead tissue, and try to stop the infection from spreading any further.

Kaylee went into surgery about an hour or so later. She came out of surgery and went into ICU where the night was long as she had become septic and required blood transfusion through the night. We watched the nurse work on her all night long to maintain her blood pressure, heart rate, oxygen, and numerous other things that we are not even sure what was happening. We also knew from the ORL surgeon that Kaylee would have to go for her second surgery within 48 hours for further debridement and antibiotic irrigation of the tissue that the still unidentified bacteria was eating in her neck and spreading upwards behind her ears.

Kaylee, now on life support, came through her second surgery (Friday). Infectious Disease also confirmed this day that Kaylee's bacteria was Staph Aerus caused by MRSA. The fact that Kaylee was so young (under developed immune system) and the pimple provided an opening for the infection to enter and invade her body, had caused the necrotizing fasciitis. The doctors now knew that one of the antibiotics that they had been given her (clyndomycin) was the right one, and they could start to wean her off the other antibiotics.

Kaylee spent 11/29/06 through 12/12/06 in the ICU, before she was moved to a floor in the hospital where she remained in-patient until she was discharged on 1/3/07. Kaylee had developed a tolerance to the morphine that she was given while in ICU and on life support, and now she needed to be weaned off the morphine, using methadone, as well as receive long term antibiotics. ICU would not allow her to leave ICU until she was off the morphine and on the methadone. In hindsight, had we had more information, we would have insisted they wean her directly from morphine and not introduce the methadone as that created lots of sleepless nights for Kaylee where she could not settle down. She would be inconsolably, irritable, diarrhea, and at one point stopped feeding and had to be put back on IV Fluid due to the methadone withdrawals. But this was all secondary issues to the bacteria. We called it a necessary evil.

Kaylee has recovered well so far. She has scarring that goes from behind her right ear, down under her chin and across her neck, and up behind the left ear. She is off the antibiotic which she had received through a pic line in her arm for some five weeks. She was completely weaned off the methadone by January 8, 2007.

Kaylee is a survivor due to that fact that we did not ignore her symptoms and got her to a hospital early. We were lucky enough to have an ORL surgeon, Dr. Vecchiardi (sp), who was vigulant and knew enough that something was amiss when nothing drained from the pimple site during lancing and that she needed watching. The surgeon also knew enough to bring in a more experienced ORL surgeon to confirm his diagnosis, and then acted swiftly. Kaylee's pimple first appeared on a Friday. Its whitehead fell off on Sunday. Kaylee developed a fever and fussiness on Tuesday; and a high grade fever Tuesday night. She was in for emergency surgery on Wednesday, and her second surgery on Friday.

UPDATE January 27, 2007
Kaylee continues to do well and has just had her two week follow up with her surgeons and infectious disease, and they continue to be very pleased with her progress. Infectious disease has basically signed off on her because she is doing so well. The surgeons will continue to follow her. It does appear at this point that Kaylee will need some reconstruction surgery under her chin and around her neck from the surgery scars. However, we will not be able to assess the scar issue until next November 2007 (scars do not become permanent until one year post-surgery).

It is our hopes that Kaylee's story will continue to educate society on the super bug which has afflicted her and others. I wished that when we were in the hospital and reading stories on the NF website, that I could have found one that closely resembled Kaylee's, as well as her age. However, your website did educate us during our time of wait-n-see, and helped us to understand what was happening and how it happened. We feel incredibly blessed that Kaylee pulled through and is doing well.

UPDATE July 24, 2007
We thought we were out of the woods and all had passed, however, recently on July 11, 2007, Kaylee was again hospitalized at Children’s Hospital with an enhancing mass on her neck (the same site that she had surgery on for NF back in November 2006). Without recounting her entire hospital stay of a week, Kaylee had developed strep throat the week leading up to her recent hospitalization without much improvement, and tested positive for MRSA skin swabs, with an alarming amount coming back from the swab of her neck. Surgical intervention for what the surgeon thought he would be placing a drain in an abscess, proved during surgery, that there wasn’t anything there to drain –despite that, they placed a drain in her neck-but still not any drainage. Cultures grown from the surgical site proved positive for MRSA again! We thought we were done with this. The bitter-sweet ending is that this infection did not turn necrotizing, and Kaylee has been placed on five week course of IV antibiotics which she is getting at home via a pic line and the help of a visiting nurse. It remains to be seen what will happen when Kaylee comes off the antibiotics and whether she can fight off this MRSA infection once and for all, or if this thing is just laying dormant waiting for the right time to re-emerge its ugly head again. Our rule of thumb now is that whenever Kaylee gets sick we are to assume it’s the MRSA and act swiftly until medical tells us its not. This is the only way that we can stay vigilant and try and protect her. In the meantime, immunology is doing a workup on her to check her immune system. Infectious disease continues to follow her and work with the family to try and rid the MRSA. Incidentally, we were happy to celebrate Kaylee’s first birthday on July 9th.