Jonathin Perez

Jonathin’s journey started on April 2, 2018 when he was sent home from school on his first day back from spring break. His mom, Katie, 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. Katie mentioned this to a customer at work who is a semi-retired pediatric hematologist oncologist and he told her “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 she had ever received, as it started the chain of events that would save her son’s life. She immediately called and made another appointment for Jonathin, and while there 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 them to Riley Children’s Hospital so they wouldn’t have to wait all weekend for the results of those tests. The Perez family will forever be grateful to her that she made this decision because it put them in the right place at absolutely the right time.

While in the ER Jonathin’s 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 him a room while they did various tests to try to figure out what was wrong. They did bloodwork, they did a strep test, they did an ultrasound, and they did an xray. The family met a so many specialists from so many different fields they’re pretty sure most of the staff knows him now.

While attempting to insert an IV, Jonathin’s nurses recognized the signs that he was slipping into septic shock, and he was rushed to the PICU. Jonathin’s parents were taken into a consultation room where three doctors came in, introduced themselves, and told them “Your son is very sick, probably the sickest kid in this hospital right now, and [we] don’t expect him to make it.”

On April 7, 2018 Jonathin 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 his family 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. 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 his family got to see those beautiful brown eyes for the first time in two weeks. The next day Jonathin’s big sister, who was 6 at the time, was finally allowed to come visit him in the hospital, and that’s when his recovery truly began. She has been his best medicine throughout his entire ordeal and has been the strongest little girl her parents 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.

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 leg bones, which is called a knee disarticulation amputation. 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.

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 his parents could finally sleep in his room with him, instead of the couch, chairs, and floor of the waiting room down the hall. 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. 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 the hospital’s Child Life team did an amazing job distracting 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.

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 he needed to wait until Hinata (which is the name he gave 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 even a year later still had to go back for at least two appointments a month.

He now has a really cool prosthetic leg, and 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”. He has had his share of struggles, and as he gets older he finds that his self-confidence wains at times, but all in all Jonathin is an extremely happy kid. He loves his prosthesis most of the time, though he would like a high activity leg that can better keep up with him. When he isn’t running around making his family crazy, Jonathin plays wheelchair basketball for the RHI Junior Racers. He has been involved in adaptive sports for going on three years now, and they have already helped deal with a few of the aforementioned self-confidence issues. Jonathin’s family are big supporters of adaptive sports, as well as advocates for amputee, necrotizing fasciitis and sepsis awareness. Jonathin has had his fair share of insurance denials for essential prosthetic devices, and the Perez’s are excited and ready to help other kids facing similar issues.

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