KJ’s Story

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Faces of the Foundation:
2016

Condition:
Stevens-Johnson Syndrome

Resources:
Mayo Clinic

U.S. National Library of Medicine

WebMD

 

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Meet KJ.

My story begins on May the 11th, when I was only eight years old. It was just ten days after my mother’s birthday, and as it turned out, it was not going to be a day like any other, but one filled with heartbreak and loss. On this day, due to faulty wiring, our trailer caught fire early in the morning. I remember waking up on my top bunk looking around in the smoke, then started coughing and passed out. The next thing I remember I was laying in an ambulance with my dad crying over me and all I could ask was where’s mom and bub(brother) before passing back out. I was unaware that my dad was the one who pulled me out of the fire and that my mother Melissa and little brother Caine never made it out.

I remember very little of the next weeks: being stabilized in Poteau before being flown to Hillcrest Burn Center in Tulsa; my aunt Billie coming to meet me; being in the hospital shower chair and the most horrible painful burn dressing changes anyone could imagine. But as horrible as it was, I was doing pretty well. I was in the burn unit a total of three weeks and when I was released on a Friday, my condition became a nightmare no one could’ve have seen coming.

Over the weekend, I started getting a rash and by Monday morning when my Dad went to help me into the bath, my skin just started ripping off at the slightest touch. I was admitted back into the Hillcrest hospital where the doctor said I was having a reaction to the medicine I had been given. By Wednesday the doctor said my rash was looking better but I kept saying I was cold so they wrapped me in heated blankets. Sadly it wasn’t helping, I was losing body temperature really fast and by Friday my skin just started to fluff off and the doctor couldn’t figure out what was wrong. It was then that two doctors, Dr Banner and Dr Barton, heard of my symptoms. They had treated one other similar case and had me immediately emergency transported over to Saint Francis hospital. There I was put into an induced coma and put on a special bed called a bear hugger so that it would maintain my body heat.

The doctors then told my family that I had Stevens-Johnson Syndrome (SJS) and that it is highly rare. It meant that not only had I been burned on the outside in the fire, but that I was now also burning from the inside out due to the drug reaction. They said that it would be up to God and me if I were to make it through the next fourteen days, but they promised I wouldn’t remember or feel any pain. Over the next month, while still in a induced coma, they gradually started weaning me off certain meds and they wrapped my body in synthetic skin to maintain my body heat and give my skin time to grow back. As all this was happening on the outside, the inside of my body was just as bad. The inside layers of my skin were doing the same as the outside and both my lungs had collapsed.

After a month, when I was brought out of the induced coma, I had to endure a lot of different operations. I had to learn how to swallow and eat again as well. They had to sew both of my eyes shut so they could heal. I was completely blind for quite awhile but after such a long period of time, I opened my left eye on my own because I couldn’t stand not being able to see anymore. After being in Saint Francis and coming out of ICU, I was doing well enough that I was able to be transferred to Children’s Medical Center so that I could do physical therapy and all sorts of other rehab.

While at Children’s Medical Center, I had to learn how to walk again which was painful and difficult. The worst of the physical therapy was when my skin grew back on my right arm, it had grown back together bent at an angle so they had to physically pull and stretch the skin everyday until it was at least straight enough for me to use. I had to learn to use my other senses to compensate for being partially blind and had to wear sunglasses all the time due to the light sensitivity. While I was in the hospital, I attended school with the other kids that were there so I didn’t fall behind even though I missed an entire year of my regular school. Around November,I begged the doctor to let me go home for thanksgiving since I was doing so well and after a lot of work, I got a weekend pass for thanksgiving. That weekend, my family and I had a lot to be thankful for. Little did I know that just a few short weeks later, just before Christmas, I would be released and free to go home for good. After seven long hard months of recovery, the best gift of all was to be home just in time for Christmas.

Cool Things to Know About Me Are That I Like:
  • Music
  • Sports
  • Video Games
  • Movies
  • Superheroes (especially BATMAN)
  • Going out with friends and family
Things I Want You to Know About SJS/TENS:
  • They are the same thing, but TENS covers more surface of the body
  • They are caused by an allergic reaction to meds, so try and be aware of what you’re allergic to and what kind of reactions the medicine given can cause
  • They both effect all the internal mucous membranes causing many things including the inability to produce saliva – this in turn causes long term teeth problems as well
  • They both can cause the body to stop producing tears resulting in many eye issues
  • They both cause respiratory complications from the over production of mucus in the sinuses and lungs.
Things People Should Know About Fire Safety:
  • Always have smoke alarms throughout your house
  • Have an escape plan and routinely go over it with you’re family
  • Teach fire safety to you’re kids including not to play with matches or lighters
Things I Have Learned on My Journey:
  • Stuff happens and sometimes life is hard
  • You can’t just dwell on the past or the negative
  • Life is a special gift so try and share that with others
  • Something as simple as a friendly smile could change someone’s whole day for the better
  • No matter what others may say or think about you, what matters is how you feel about yourself. At the end of the day, the only thing that matters is if you can live with the way you are
  • Know that God has a plan for you and even in the darkness, He will shine a light

KJ’s Photos

KJ’s Blog

Popeye91

Well almost a month ago I was put on a vent for four days which is the longest time I've ever had to have it at once. I spent some time in icu once it was taken out then the recovery process began but I'm not gonna lie this time really scared me cause of how fast everything happened plus I just wasn't recovering as fast or at least on pace like I have all the other times. I'm no stranger to being put on a vent or recovering from it but this time has been different. I am very blessed and thankful for all the prayers and we'll wishes I know it helped but it has been rough there was fear there that has never been there before which caused doubt to set in and the questions in my mind.. am I making progress? My voice is gone will it ever come back? And has to much damage been done this time will I ever be the same? When you can't talk and are so tired you can't even see you're trapped in your own mind and that anxiety seems to never go away but as I said I am blessed with such wonderful family my parents never left my side my brothers and sisters helped so much as well and then all the prayers and love sent from everyone I do thank everyone and thank God for getting me through that first stage it was definitely a toll on my confidence and mentality but they moved me over to health south rehab to do therapy. I just have to say they are so great here my case manager rusty has really done great getting everything I need and answering any and every question I had..now to my OT Tony he was great with helping me get my strength back in my upper body but he was pretty Kool to hang out with..but I have to say my PT Jayla was definitely awesome!! As I said before this time got in my head and I hadn't felt like I was making any progress and doubt clouded my mind but she would talk with me settle my nerves but she kept building my confidence back she helped me get out of my own head and showed me I was making good progress.. "side note I wonder if it's a job requirement that all PT ladies are are pretty or if I'm just lucky like that?l :)"I get to go home today but I still have a lot of work to do and will continue home therapy but progress has been made thanks to the wonderful staff here at health south.. I feel so blessed thanks to the good Lord for giving me the strength to keep going through this tough process..

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Hannah Fulkerson

KJ-It was so nice to meet you at the Superhero Gala last night! I really look up to you and all that you've overcome. That take a lot of strength, bravery and courage. You're superhero status for sure : )

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Popeye91

Well today is day one of our Oklahoma firefighters burn camp I've been packed and ready for a few days now can't wait to see everyone these next 5 days will be a blast and get to see some really inspirational kids. I've been goin to camp since I was a kid this will be my 17th year at camp and to get to be apart of something as awesome as this is truly a blessing!! More updates to come throughout the week!! ☺

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Popeye91

Well the month of May is always a hard time for me and my family especially the first two weeks with my mom's birthday on the first then the anniversary of the fire and her and my brothers passing on the 11th plus mothers day and with all that brings back painful memories but it brings back the good memories as well and yes they are painful as well but it's a joyful pain that I'm lucky to feel which also got me thinking how grateful and blessed I am cause with all that pain I was rewarded. I have my wonderful mom lora who has taken and still takes such good care of me and tho I miss my mom everyday so much I couldn't picture my life without lora.i am so blessed I got to have two really wonderful awesome smart beautiful and strong women I got to call mom so this goes out to both my great mom's who I love very much!! 🙂

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Jennifer

A great read!!! So proud of you Kj!!! Love you buddy!!!

Popeye91

Thank you very much! 🙂

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