There's nothing more concerning than when your child is sick, especially for parents who tend to fear the worst and always worry that the sniffles are really the flu, a stomach ache is really appendicitis, or an ear ache is the start of an ear infection. But for one mom from Indianapolis, her boy came home from school with common cold symptoms that actually turned into a terrifying diagnosis. For this family, the hospital become their second home after 4-year-old's teacher sent him home with lethargy and a fever that was actually necrotizing fasciitis, a type of infection that is also known as flesh-eating bacteria.
This past spring, 4-year-old Jonathin Perez's teacher noticed that he wasn't his normal, energetic self.
On April 2, the preschooler was sent home from school with a fever and, according to his teacher, seemed lethargic. His mom, Katie Wilson-Perez, was concerned, and after two days of treating her son with ibuprofen and rest, she decided that his symptoms only seemed to be getting worse.
Katie and her husband, Evodio, took their son to the doctor who "said it just appeared to be a bug and recommended Tylenol and ibuprofen be given intermittently, as well as lots of Gatorade," Katie tells CafeMom.
"I mentioned to her that his legs were bothering him, and she suggested he was probably just achy from being sick." Katie trusted what her doctor told her and said that the diagnosis "made sense, so we went home and did as instructed."
Little did she know that her son was infected with a different type of bacteria completely.
Days later, Jonathin was reluctant to use his legs and had awoken to a swollen left arm, which concerned Katie.
"We thought he was just achy and whiny because he didn't feel good," Katie says, telling us that on April 5, Jonathin didn't want to walk and that his left arm had already begun to bother him. Overnight, his arm ballooned enough that his parents became seriously concerned. They decided to bring their son back to the doctor, who then passed them straight on to Riley Children's Hospital, where they could get bloodwork done on Jonathin before the weekend started.
"We are so glad that she did because while we were at the hospital, getting countless tests, X-rays, and ultrasounds done, he went into septic shock," Katie says. "And [then he] was rushed to the Pediatric Intensive Care Unit."
Things quickly went from bad to worse. "Doctors told us that he was very sick," Katie says. "Probably the sickest kid in the hospital, and that they didn't expect him to make it."
Doctors discovered that he had a potentially deadly infection and was fighting a flesh-eating bacteria.
According to the Centers for Disease Control and Prevention, necrotizing fasciitis is "a bacterial infection of the tissue under the skin that surrounds muscles, nerves, fat, and blood vessels. The bacteria most commonly get into the body through a break in the skin. Once in the body, the bacteria spread quickly and destroy the tissue they infect." In Jonathin's case, they believe he caught the infection from the same bacterial strand that causes strep throat, group A Streptococcus bacteria, but otherwise the contaminant for his infection is unknown.
The infection had spread to Jonathin's left arm and his right leg, and his ligaments were incredibly swollen. "The doctors initially had to go in and release the fluids so that the life-saving antibiotics could get to those limbs," Katie says.
Over the next six weeks, he had nine surgeries to help stop the infection from spreading. "They were all either debridements (where they go in and clean out any dead tissue so that it doesn't make him sick, and also to make sure there was no infection hidden in there that they missed) or plastic surgery on his arm," Katie says. And although at that point the status of Jonathin's arm wasn't clear, his doctors knew that they would have to amputate his leg.
"With no blood flow, the leg eventually turned purple and then black," Katie says. "The damage had already been done and the leg never recovered."
Although her son did eventually get his right leg amputated, Katie clarifies that antibiotics were the cure that saved her son's life. His leg had just suffered too much damage and would not heal. Jonathin continued to get debridement surgeries to make sure the infection was gone and it wouldn't come back.
Katie also says that they considered amputating Jonathin's arm as well "but he still had good blood flow to the fingers. So they kept the arm, but he had lost about 95 percent of the skin, as well as tissue and tendons."
It also took multiple skin grafts and a knee disarticulation to correct Jonathin's damaged arm and leg, but he finally started to recover.
Between the debridement surgeries, antibiotics, and his leg amputation, Jonathin finally cleared all of the necrotizing fasciitis. "His skin on his arm is healing nicely but he still has limited mobility, and they think the triceps might have been too damaged to work at all anymore," Katie says.
Katie says that "only time and lots of therapy will tell" if her son will ever fully recover, though Jonathin has been working toward mobility again.
"He goes to the hospital three times a week for two hours, for physical and occupational therapy," she says. Jonathin also was fitted with a prosthesis for his return back to school this Thursday.
She tells us that their family has tried to return to its favorite activities from before Jonathin's infection. On the one-month anniversary of his discharge, "He did his very first 5K in which he walked the last five or so feet by himself with the walker, while complete strangers stopped to cheer him on," she says.
And the family has even begun to joke about Jonathin's new body.
Katie joked on Facebook that this was "how it actually happened." We totally buy it.
