“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 fromPJ面具，他坚信他是来自神奇的女士虫子。
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.
一周的进展时,他没有得到任何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.’
最终成为我收到的最重要的建议。
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.
由于是星期五，她派我们去了赖利儿童医院，因此我们不必整个周末等待测试结果。我们将永远感谢她做出这个决定，因为这使我们绝对正确地进入了正确的位置。回顾过去，我经常责怪自己没有把他带回去早点去看医生，但最终我相信一切都是有原因的。如果我们在最初的几天做了任何一件不同的事情，那么我们可能不会去医院，而乔纳森（Jonathin）会在他的床上死亡。
当我们进入急诊室时，他的右腿也开始肿胀，腿部和脖子后部开始形成皮疹。他们最终给了我们一个房间，而他们进行了各种测试，试图弄清楚出了什么问题。我向无数的医生和护士解释了本周的事件，所有人都问他是否有割伤或伤口。奇怪的是乔纳森，他没有，当时我没有意识到这个问题的意义。
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.
当他打电话给我时，我只在那里呆了30分钟，并告诉我我需要尽快回到医院。乔纳森（Jonathin）被送往ICU。我几乎不记得告诉老板“我必须走”，她敦促我离开门。我不记得那里的开车。我不记得停车。我不记得赶到7楼去电梯见我丈夫。我记得的是，一个社会工作者带我们回去，经过一个房间，有大约10至15名护士和医生。他们正在走进走廊。有很多。我们被带入咨询室，我记得不安，告诉我的丈夫，‘我不想在这个房间里。 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.
这些是您听到其他人的故事。这些就是您在新闻中看到的事情，并说：“哦，那个可怜的家庭”，然后您继续生活。乔纳森（Jonathin）不在一个小时前就可以了。我刚刚看到他说话并喝了动力。他无法死亡！
当我离开时，我没有目睹的是护士拼命试图获得静脉输液系列以获取抗生素。我很幸运地避免看到他们急于给他腿部的腿部注入，然后他陷入了化粪池冲击。我不必听到护士要求备份，或者看到人们冲进房间迅速将他移到ICU，并问我丈夫是否有任何人可以打电话（以进行情感和道德支持）。
当他打电话给我时，他很镇定。他忽略了他们已经告诉他乔纳森快要死的事实，因为他担心我会在那里的路上发生事故。每个人都告诉我，面对发生的一切，我都有如此积极的态度，但这是因为我很幸运地拥有创伤引起的记忆丧失的礼物。（即使我写这个故事，我也必须向我自己做的其他人和笔记咨询文本。）不幸的是，我的丈夫还记得每个细节。
2018年4月7日，乔纳森·维森特·佩雷斯（Jonathin Vicente Perez）顽固，直到最后，违反了赔率，击败了坏死的fast和败血症。它影响了他的右腿和左臂和肩膀。他的身体肿胀，他们担心它会到达他的胸腔，这是非常致命的。ICU团队不断将升压器（挽救生命的药物）泵入身体，以使血液流向他的重要器官。不幸的是，在如此多的加压剂上，通常缺乏流向四肢的血液。
Jonathin的右腿筋膜室综合征(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.
4月9日，他终于稳定了，可以去OR进行他的第三次清理手术，他们向我们打破了消息，他们将不得不将他的手臂截肢在肩膀上。他不得不经过血浆置换，从而摆脱了剩余的受感染的血小板并用捐赠的血浆过滤，并且在脓毒症对它们做了很多数字之后，他还进行了透析几个星期，以帮助开始肾脏。
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.
因此，在2018年4月27日，经过5次先前的清理手术进行并清理所有感染以及死组织和肌腱后，乔纳森的右腿在骨头之间被截肢，这被称为膝盖脱节。他的骨科外科医生一直等到这段时间，以使肿胀下降，看看是否可以节省更多的腿。他们最初预计必须在膝盖上截肢，但能够通过等待来节省一半的膝盖。
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.
手术后移开腿后，我去了商店，找到了他最喜欢的角色之一的玩具人物，Gekko来自PJ面具。我切断了他的右腿，向乔纳森展示了它。‘你仍然喜欢盖科，对吗？他有点不同，’我告诉我的儿子。‘但是他仍然是一个超级英雄。’
On June 21, 2018, Jonathin was discharged from the hospital and we finally got to bring him home.
我们住在的地方有大约10个步骤，我们必须上下走到我们的“一楼”公寓，因此我们正在同一学区搬到更多的障碍的地方。虽然他擅长在轮椅上操纵自己，但他仍然无法和步行者同行。我们必须等到Hinata得到治愈，然后才能安装假肢。
他必须每周3-4天回到医院，以获得PT，OT和各种任命（骨科，康复，传染病，肾脏，心脏超声心动图，常规血液工作，X射线等），所以我们在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.
我们已尽最大努力鼓励乔纳森（Jonathin）充分利用他的第二次机会，并感谢他仍然可以独自出发。乔纳森（Jonathin）在他出院一个月的一周年纪念日上做了他的第一个5K。我们将他推到轮椅上，直到最后5-10英尺，在那里他用步行者跳过终点线。开始下雨，他摔倒了两次，但他一直走了。
从那以后，他还参加了首届坏死筋膜炎基金会5K，第六届年度杰弗里·雷·戴维斯·塞普西斯挑战赛5K颜色跑，他是第四届年度莱利儿科重症监护（ICU）Walk-a-a-thon-thon-thon-thon-thon-thon-thon thon-thon thon-thon thon-thon thon-thon thon-thon thon-thon-thon-thon thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thon-thonton。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.
尽管我永远不会希望乔纳森（Jonathin）忍受着痛苦和痛苦，或者其他任何人，但我对他发生的事情并不痛苦。由于NF，我们遇到了很多很棒的人，并且也为许多人提供了帮助。在所有这一切之前，我从未听说过坏死性筋膜炎或败血症，现在我正在努力提高对它的认识，因此没有其他人必须经历我们所做的事情。
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.”
This story was submitted tobeplay网络一直不畅by Katie Wilson-Perez of Indianapolis, Indiana. You can follow her and her son’s journey onInstagramandFacebook。提交自己的故事here并确保subscribeto our free email newsletter for our best stories.
阅读更多这样的故事：
‘以为她有流感，我们带我们的小女孩去了医院。她距离死亡几分钟了。医生说：“她不会整夜做到。”她转向我。“妈妈，我可以做到！”
'我们去了海滩。她在我们酒店的游泳池里游泳。然后她的小腿剧烈疼痛醒来。我们认为这是查理的马。我错了。’
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