‘I don’t want to be here! People get bad news in these rooms!’ My son’s leg was rapidly turning black.’: Mom shocked by horrific diagnosis after being told it was a ‘regular bug’

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“Before it all, Jonathin was just a normal kid. He ate non-stop, climbed on everything in sight, and loved hiking. He loved superheroes of all shapes and sizes, from Spiderman to Gekko from PJ Masks, and he was convinced that he was secretly Cat Noir from Miraculous Lady Bug.

Courtesy of Katie Wilson-Perez

He was in his first year of preschool with two wonderful teachers that he adored, and they loved him just as much. So, they noticed right away on his first day back, from a snowy spring break spent in our home in Indianapolis, that he wasn’t acting like himself. They called and said he was lethargic and had developed a fever, so I came and picked him up from school. I took him to the doctor’s office and she said it looked like just a regular bug (nausea, fatigue, fever) and to give him Gatorade and Tylenol.

As the week progressed, he didn’t get any better. He started complaining that his legs hurt and he didn’t want to walk anywhere. I mentioned this to a customer at work who is a semi-retired pediatric hematologist oncologist and he told me, ‘I don’t want to freak you out, but you need to take him back to the doctor and get blood work done as soon as possible.’

That ended up being the single most important advice I have ever received.

I immediately called and made another appointment for Jonathin. When I got home from work, my husband told me that my son had been complaining that his arm was bothering him. While we were at his appointment, his left arm started swelling up at a rapid rate. His doctor instantly noticed that he was much worse than the last time she had seen him, and agreed that blood work needed to be done because of the pain, redness, and swelling, on top of the other symptoms.

Since it was a Friday, she sent us to Riley Children’s Hospital so we wouldn’t have to wait all weekend for the test results. We will forever be grateful to her that she made this decision because it put us in the right place at absolutely the right time. Looking back, I often blame myself for not taking him back in to see the doctor sooner, but in the end I believe that everything happens for a reason. Had we done any one thing different in those first few days, we might not have been at the hospital when we were, and Jonathin would have died at home in his bed.

While we were in the ER, his right leg started swelling up as well and a rash started forming on the leg and the back of his neck. They ended up giving us a room while they did various tests to try to figure out what was wrong. I explained the events of the week to countless doctors and nurses, all of them asking if he had any cuts or wounds. Oddly enough for Jonathin, he had none, and I didn’t realize the significance of this question at the time.

They did blood work, a strep test, an ultrasound, and x-ray. We met with countless specialists from so many different fields that I’m pretty sure most of the staff knows him now. The next morning, he was still talking and complaining about the nurses taking blood for more tests, so I went to work while my husband stayed with him.

Courtesy of Katie Wilson-Perez

I was there for only 30 minutes when he called me and told me I needed to get back to the hospital as soon as possible. Jonathin was being rushed to the ICU. I barely remember telling my boss ‘I have to go’ and her urging me out the door. I don’t remember the drive there. I don’t remember parking. I don’t remember rushing to the 7th floor to meet my husband by the elevators. What I do remember is a social worker walking us back, past a room, with about 10 to 15 nurses and doctors; They were spilling out into the hallway; there were so many. We were taken into a consultation room and I remember being uneasy, telling my husband, ‘I don’t want to be in this room. People always get bad news in these rooms.’

Sure enough, three doctors came in, introduced themselves, and told us, ‘Your son is very sick, probably the sickest kid in this hospital right now, and [we] don’t expect him to make it.’ To say I was in shock is an understatement, and I think the reason I have been able to cope with all of this so much better than my husband is the fact that it never truly set in for me.

These are the kinds of stories you hear about other people. These are the things you see on the news and say, ‘Oh, that poor family,’ and then you go on with your life. Jonathin was just fine not even an hour before. I had just seen him talking and drinking Powerade. There was no way he could be dying!

What I hadn’t witnessed when I had left was the nurses trying desperately to get an IV line in to get him antibiotics. What I was fortunate enough to avoid seeing was them rushing to give him an intraosseous infusion in his leg, and him slipping into septic shock. I did not have to hear the nurses call for back up, or see people rushing into the room to move him quickly to the ICU, and asking my husband if he had anyone he could call (for emotional and moral support).

When he did call me, he was calm. He left out the fact that they had already told him that Jonathin was dying, because he was worried I would get into an accident on the way there. Everyone tells me that I have such a positive attitude in the face of everything that has happened, but that is because I have been blessed with the gift of trauma-induced memory loss. (Even as I write this story, I have to consult texts to other people and notes that I’ve made to myself.) My husband, unfortunately, remembers every single detail.

Courtesy of Katie Wilson-Perez

On April 7, 2018, Jonathin Vicente Perez, stubborn till the end, defied the odds and beat both Necrotizing Fasciits and Sepsis. It had affected both his right leg and his left arm and shoulder. He had swelling all over his body and they were worried that it would reach his chest cavity, which is extremely deadly. The ICU team kept pumping vasopressors (life-saving medications) into his body to keep the blood flowing to his vital organs. Unfortunately, the result of being on so many vasopressors is often lack of blood flow to the extremities.

Jonathin’s right leg suffered compartment syndrome (a condition in which increased pressure results in insufficient blood supply to tissue) from the knee down, and it was pretty obvious to us from the increasingly darkening purplish look of it that it would not recover.

Courtesy of Katie Wilson-Perez

On April 9th, he was finally stable enough to go to the OR for his third debridement surgery, and they broke the news to us that they were going to have to amputate his arm at the shoulder. He had to go through plasmapheresis which got rid of the remaining infected blood platelets and filtered in donated plasma, and he was also on dialysis for a few weeks to help jumpstart his kidneys after the sepsis did a number on them.

One does not often look at dialysis as a good thing, but again I will reiterate that everything happens for a reason. Because of the fact that he was on dialysis they were able to do a CTA scan which showed he had good blood flow all the way to the fingers in his left arm. His orthopedic surgeon called around to several ‘seasoned’ surgeons across the US, and one in Texas told him that if there was good blood flow in the arm, he should hold off amputating and see how it improved. If not for the doctor’s thoroughness, and had Jonathin not been on dialysis, making it easy for them to put the dye in his system and then quickly remove it, he would have lost his arm.

A week after this all started, he had his 4th debridement surgery and most of the skin on the shoulder, arm, and hand had to be removed. A few days after that they extubated him and brought him out of his medically induced coma, and we got to see those beautiful brown eyes again. They told us it would be a few days before he’d be able to talk, but again, stubborn Jonathin couldn’t resist the opportunity to flirt with one of his cute nurses and introduced himself to her that evening.

The next day, we finally let his big sister come visit him in the hospital, and that’s when his recovery truly began. She has been his best medicine throughout this entire ordeal and has been the strongest little girl I have ever seen. She was not afraid of all the tubes and wires, the wound vacs, or the progressively blackening bottom half of his right leg. When we explained to her that Jonathin’s leg had gotten very sick and asked her what she thought the doctors should do about it, she explained very matter-of-factly, in 6-year-old terms, that an amputation was the best solution.

Courtesy of Katie Wilson-Perez

And so, on April 27, 2018, after 5 previous debridement surgeries to go in and clean out all of the infection, as well as dead tissue and tendons, Jonathin’s right leg was amputated in between the bones, which is called a knee disarticulation. His orthopedic surgeon had waited until this time to allow the swelling to go down to see if more of his leg could be saved. They had originally anticipated having to amputate above the knee, but were able to save half of it by waiting.

Courtesy of Katie Wilson-Perez

Jonathin was always a little terror child before he got NF, but has become quite a sweetheart since everything happened. I often joke that they amputated his evil leg, especially because his stump, which he named ‘Hinata’ (after the Haikyuu! anime character Shoyo Hinata) is always the one blamed for things. It’s like when a kid has an imaginary friend and they blame everything on them. Hinata gets into a lot of trouble, not Jonathin.

After the surgery to remove his leg, I went to the store and found a toy figure of one of his favorite characters, Gekko from PJ Masks. I cut off his right leg and showed it to Jonathin. ‘You still love Gekko, right? He’s just a little different,’ I told my son. ‘But he’s still a super hero.’

Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez

On June 21, 2018, Jonathin was discharged from the hospital and we finally got to bring him home.

Courtesy of Katie Wilson-Perez

The place we had been living in had about 10 steps we had to go up and down to get to our ‘first floor’ apartment, so we were in the process of moving somewhere more handicap accessible within the same school district. While he had gotten pretty good at maneuvering himself in a wheelchair, he still couldn’t walk with his walker yet. We would have to wait until Hinata was healed before he could be fitted for a prosthesis.

He had to come back to the hospital 3-4 days a week for PT, OT, and various appointments (orthopedics, rehab, infectious disease, renal, heart echocardiogram, regular blood work, x-rays, etc), so we were at the Riley Children’s Hospital most of the time. Thus, we weren’t working or moving as many boxes at the speed we would’ve liked.

Unfortunately for us, someone took notice of our lengthy absences from our old apartment and decided to relieve us of the rest of our personal belongings, including some of Jonathin’s wound dressing supplies. Being kicked while we were already down was no fun, but considering the year we had already had we decided not to let something like this get us down. We had nearly lost one of the most precious things in our lives; Dishes, a vacuum, and a kitchen table (to name a few things) could never compare. When my parked car was involved in a hit-and-run, and we found out the cameras weren’t working, I just shrugged. ‘At least we still have Jonathin.’ I guess I just saw it as us having emptied our good luck bank in one hospital stay, and having to fill it back up by dealing with a lot of bad luck for the rest of the year. 2018 was a year we were happy to see go.

We have done our best to encourage Jonathin to make the most of his second chance at life, and to be grateful for the fact that he can still get around on his own. On the one-month anniversary of his discharge, Jonathin did his very first 5k. We pushed him in the wheelchair until the last 5-10 feet, where he used his walker to hop over the finish line. It was starting to rain and he fell twice, but he kept going.

Since then, he has also participated in the inaugural Necrotizing Fasciitis Foundation 5k, the 6th Annual Jeffrey Ray Davis Sepsis Challenge 5k Color Run, and he was a patient champion at the 4th Annual Riley Pediatric Critical Care (ICU) Walk-a-thon. He now has a really cool prosthetic leg, which he has completely mastered in the 9 months that he has had it, and we’re currently in the process of making his ‘high activity’ leg that has a running blade that can better keep up with him.

He has gotten comfortable with his prosthetist to the point that he steals his gum and walks around the office like he works there, and probably will someday. He has had the opportunity to meet several other amputees, both at his prosthetist’s office and at the hospital, and has even prompted a few (yes, multiple) classmates to go home and demand elective amputation surgery so they can ‘have a cool robot leg’ too.

Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez
Courtesy of Katie Wilson-Perez

Though I would never wish the pain and suffering Jonathin has endured on him, or anyone else, I am not bitter that this has happened to him. Because of NF, we have met so many wonderful people, and have helped many as well. I had never heard of Necrotizing Fasciitis or Sepsis before all of this, and now I am fighting to raise awareness about it so that no one else has to go through what we did.

Courtesy of Katie Wilson-Perez

I took the Facebook page that I had originally created to update friends and family on his condition, and turned it into a way to reach others and show them the very real consequences of this terrible disease. This eventually branched out to Instagram and now Jonathin’s Journey has 1400+ followers from all over the world. Since his discharge, we have raised over $1050 for the Riley Children’s Foundation, the Necrotizing Fasciitis Foundation, the Sepsis Alliance, TinySuperheroes, and more.

Just when I think I’m running out of ways to raise awareness, a new opportunity presents itself. I refuse to let his suffering be in vain, and will continue to use what happened to him for good. We are beyond blessed to have been given a second chance with our Jonathin, and I will never let it go to waste.”

Courtesy of Katie Wilson-Perez

This story was submitted to Love What Matters by Katie Wilson-Perez of Indianapolis, Indiana. You can follow her and her son’s journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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