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 TEN (Toxic Epidermal Necrolysis), Erythema Multiformae Major & 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
To be continued.
Part 2: Stevens-Johnsons Syndrome, the Beginning
Wow, Beth, just WOW. Kyle is truly an amazing kid to endure that, and as his parents (and little brother!) are equally as strong to have advocated and supported him throughout this. Although SJS is rare as you say, it’s frustrating to think Kyle had to suffer until a diagnosis was confirmed. Keep the faith!
P.S. I think you are doing exactly the right thing by sharing about this and educating us. I have a friend who also has a son with a very rare disease and she has chosen the same route…to spread the word. Thank you.
Andrea,
Seriously? You are always so thoughtful with your responses. Thank you! I think you are singlehandedly keeping me going. I applaud your friend and her son. What I learned is that no matter what the issue: sickness, school, emotions . . . , advocating with grace is key. As parents, it is our job. Thank you for getting it.
I believe I saw the SJS episode of House. I was shaking my fists at the TV. To me they down played the seriousness of SJS.
I am grateful you are educating others about SJS.
And, again , my hat’s off to you
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