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Jonathin’s journey started on April 2, 2018 when he was sent home from school on his first day back from spring break. We 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 bloodwork done as soon as possible”. That ended up being the single most important advice I have ever received, as it started the chain of events that would save my son’s life. I immediately called and made another appointment for Jonathin, and when I got home from work my husband told me that he 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 bloodwork 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 so we wouldn’t have to wait all weekend for the results of those tests. 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 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 left shoulder/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 our wounds. Oddly enough for Jonathin, he had none, and I didn’t realize the significance of this question at the time. They did bloodwork, they did a strep test, they did an ultrasound, and they did an xray. We met a so many specialists from so many different fields I’m pretty sure most of the staff knows him now.
He was still talking and complaining about the nurses taking blood for more tests, so I went to work that morning while my husband stayed with him. 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 because he was being rushed to the ICU. I 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. I do remember them walking us back, past a room with, easily, 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. He was just fine not even an hour ago. 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, and 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 consults texts to other people and notes that I’ve made to myself.) My husband, unfortunately, remembers every single detail.
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. 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. 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, that 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.
On April 13th he had his 4th debridement surgery and most of the skin on the shoulder, arm, and hand had to be removed. On April 15th they extubated him and brought him out of his medically induced coma, and we got to see those beautiful brown eyes for the first time in two weeks. 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. 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. Jonathin was always a little terror child before he got NF, but has become a total 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 when he gets into trouble (much like a kid will blame their imaginary friend for all of their wrongdoings).
On April 30th they removed the homograft (cadaver skin) from his arm and did an autograft of skin taken from both of his thighs. On May 2nd he was moved to the Burn Unit and we could finally sleep in his room with him, instead of the couch, chairs, and floor of the 7th floor waiting room. While in the Burn Unit he had his final two surgeries, and on May 16th his wound vacs were finally removed. He began doing physical and occupational therapy, and was finally able to sit in a wheelchair. Once I proved I was capable enough to push the chair and pull the IV stand at the same time, we were able to escape the 5th floor and explore the hospital. It was snowing when he was admitted, so imagine his shock when we went to the lobby and he saw green leaves and people in shorts outside of it’s windows.
With all of his skin graft surgeries out of the way we began his daily baths and dressing changes. Jonathin was not a fan of this at all but we had lots of help from the hospital’s Child Life team to distract him and make the process easier. On May 24th he was moved to inpatient rehab where he did 3 hours of therapy a day, his daily baths and dressing changes, and even got to go on two out-of-hospital field trips to the Indianapolis Zoo and a baseball game. Rehab was rough, and it got to the point that the therapists kindly mentioned to me that it might be best for both Jonathin and I if I took his therapy time to see to my own needs. Without me there to yell at/beg for help to the point of tears (both his and my own), he had to suck it up and push forward. We were given homework assignments while in rehab to help improve the mobility and use of his left arm. We were already pretty familiar with the layout of the Riley by this point, but quickly learned every inch of it during our (daily) hour-long wanderings with Jonathin on a prone cart that looked to be older than the hospital itself. One of Papi’s customers at work gifted Jonathin with an Ipad that proved very effective in distracting him while we did super painful arm stretches to make sure “Lefty”s new skin didn’t get too tight and restrict his range of motion. His last week in the hospital the nurses had both of us parents do a “test run” with the baths and dressing changes, but the Burn Unit had been very inclusive and had let me learn and do it myself when asked, so we were already pros.
On June 21, 2018 Jonathin was discharged from Riley Children’s Hospital. While he had gotten pretty good at maneuvering himself in a wheelchair, he still couldn’t walk with his walker yet, and we would have to wait until Hinata (his stump) 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 bloodwork, xrays, etc), and still a year later has to go back for at least two appointments a month. Riley has become our second home and it will feel weird when we don’t have to go there anymore.
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. He now has a really cool prosthetic leg, which he has completely mastered in the 7 months that he has had it, and we’re currently in the process of trying to get him approved for a “high activity” leg 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 like Jonathin”.
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 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. 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 700+ followers from all over the world. Our page caught the attention of a local news station and Jonathin’s story was featured on television on Rare Disease Day. Since his discharge we have raised over $800 for the Riley Children’s Foundation, the Necrotizing Fasciitis Foundation, 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.
