Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…

I shake my Fists at You!

Kyle in the hospital

Over the next few weeks I want to share our story, the story of how Stevens-Johnsons Syndrome came  into our life (twice), burned our house down and changed us forever.  Our world completely turned on its head, I honestly do not know how we made it through. Truth be told, we are still not out of the woods and sweet Kyle will be dealing with the physical complications (like a very weakened immune system)  for the rest of his life.  Just this week he is getting over the combo-illness-package of Hand Foot & Mouth, Strep Throat & a nasty Staph Infection on his upper thigh. I am so glad he did not have to go back in the hospital. That’s how he rolls — now.

Dave, Eli and I are still dealing with the residual effects of being passengers along for this crazy, mean and long ride.  I still wonder if Eli, who was so neglected, really knows that we love him just as much as we love his big brother.

Eli & Me

What I can tell you is that we are stronger and definitely more focused.   The little things just don’t seem as big anymore. Kyle is one tough kid with a pain threshold that is beyond anything I have ever seen. In October  2010 Kyle was admitted to  Primary Children’s Medical Center a very sick young man, with his face swollen, eyes red like I have never seen and ironically with Pneumonia.  As it states on its Website, Primary Children’s Medical Center serves the needs of children in the states of Utah, Idaho, Wyoming, Nevada and Montana. The hospital is equipped to treat children with complex illness and injury and is recognized as one of the top children’s hospitals in the United States.  We knew this was the best place Kyle could be. We knew we were in good hands except for one little glitch. See, from October – November Kyle’s doctors spent a lot of time trying to figure out what was wrong with Kyle, often likening Kyle’s experience to an episode of House:

“>Interestingly, in last week’s House episode, after a diagnosis of Stevens-Johnson syndrome, House called it a day and let the team go home. With no known cure, it was odd to see House just give up. I’m not sure if it was him accepting defeat or what, but it seemed oddly out of character.

Stevens-Johnsons Syndrome Lips

 

The doctors could never quite agree (that is a whole other part of the story) on what Kyle actually had, which consequently affected Kyle’s treatment and long term healing process. (Yes, let me be absolutely clear. The diagnostic disagreements between the doctors made things a lot worse.)  Because they had at least agreed on a family of diseases, I, of course, was on the internet trying to find anything I could to prove to them exactly what the first doctor who saw Kyle diagnosed him with.  Because this initial attending physician is a dermatologist and this family of disease is referred to as “the only reason a dermatologist is called to the ER,” I felt confidant in the initial diagnosis.   Kyle’s case was more rare, which made me slightly more patient with his doctors. See, Stevens-Johnsons Syndrome affects the mucous membranes of the body. Usually the epidermis is affected often sending a patient to the burn unit. Kyle’s SJS went internally. It started with his eyes, nose and mouth and moved  down his throat and through his digestive system. We still do not know how permanent his lung damage is. Because there was continued disagreement,  one of the many things I did to advocate for Kyle was research. I researched things like TENS, Erythema Multiformae Major and Minor.  Through a month long stay in the hospital and finally with a simple biopsy, it was concluded that Kyle, in fact, had Stevens-Johnsons Syndrome. To this day, I think I would have rather he had been bitten again by a Copperhead Snake.

 

Kyle

 

[to be continued]


Here are a few things I jotted down during our month long hospital stay:

The role of a parent: Diplomacy, Advocating & Educating. Mini Update: Just watched the Ophthalmologist numb Kyle’s eyes and clean them with several surgical swabs and then this metal tool to break up eye adhesions. – 11.04.10

No Drama Just Truth: Now that we are coming up for air I can begin to express the state of absolute shock our family has been in for the past two weeks. The pain has been so incredibly difficult for Kyle that he was unable to articulate it in “traditional” ways. He is also good at putting on & then crashing when you leave the room. – 11.07.11

FROM my sister Brenda: Take a breath. You can do this. I so wish I could be there with you. We love you and will keep sending hugs and prayers. You guys are awesome parents. Kyle would not be getting the care he is with out you advocating for him.  11.07.11

Middle of the Night: What a roller coaster. It is nearly 1 AM. Kyle woke up in such pain. He is super congested & uncomfortable. After some tears, screams & pain medicine, he is calming down — I hope. Remembering what his Primary Dr. Says: healing is SLOW! – 11.06.11

. . . If you do not read any further and if you only take one thing away from this post, please take this.   Tune out the noise and listen to your heart. Remember to advocate for your children and loved ones. Remember to get the doctors on your side and remember to be thoroughly vigilant.  Trust yourself! No one will have their back like you!

To be continued.

Part 2: Stevens-Johnsons Syndrome, the Beginning

12 Comments
  1. November 9, 2011
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