(SJS) and toxic epidermal necrolysis (TEN)[1] are two forms of a life-threatening skin condition, in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex that affects the skin and the mucous membranes.
Today my writing is sloppy and brief. I will fix it when I can. Shortly we are leaving to take Kyle to the doctor.
As most of you know, a year ago Kyle was diagnosed with Stevens-Johnson Syndrome. Recently I began sharing our story. I have alluded to the fact that Kyle is still not out of the woods. Today is another reminder of how delicate life is. His immune system is weak. When Kyle gets sick his body always embraces the whole go-big-or-go-home attitude. Strep Throat can get him back in the hospital and a cut will turn into a serious staph infection. That’s just how it is, our new normal. Two weeks ago he had Strep Throat (again), Hand, Foot & Mouth, and a Staph Infection on his upper thigh all at the same time.
Last night I came home from the Salt Lake City H&M Grand Opening Event (pays to have press connections, by the way). When I walked in the door, I could hear Kyle moaning. I settled him and about an hour later he came running into my room screaming. “MOM, MOM, I can’t breath! My stomach! Mom! Mom! I don’t feel well!” Deliriously I watched him try to throw up in my bathroom and eventually we made our way to the kitchen where after a few minutes of helping him relax (or relax as much as one can right before you throw up), he puked his guts out and continued to puke his guts out all night long while Dave and I played chicken with each other over who would get up and be with Kyle next.
It may be nothing. These days with Kyle, it often is somthing. My head aches and I am not sure what to do. This is how we roll.
Simultaneously numb and completely in shock. That is how I have been and continue to be. Slowly I am coming back. We are all coming back. On February 6, 2011 I wrote the following:
Seeing Kyle’s fingernails and toenails peel off layer by layer until they reach the underlying skin from the nail bed up is what knocked some life back into me. The realization that something so seemingly minor, something we did not even notice until today, eight weeks after Kyle was first admitted to the hospital, woke me up. The weight is heavy. His fingernails look so gross and so painful. When I first looked at them I thought they were bloody because he had been picking the scabs out of his damaged nose. I was wrong. These ten fingernails and ten toenails were destroyed and slipped by unnoticed, unnoticed until now.
Before this all happened, if I were simply dealing with Kyle’s freakishly peeling fingernails, I would have completely lost my mind. Now peeling in such a horrific way, I didn’t even notice.
I wonder how long? You can tell they have been peeling for some time. Every single day I care for Kyle. Every single day I look in his mouth, examine his eyes, touch his puffy face and ask him how he is doing. Every single day I give him a litany of medication, medication that are administered around the clock, during the night, during the day, when I want to sleep, when Dave wants to sleep, we can’t. We are making sure our boy is ok. These bloodied and peeling fingernails woke me up, yet right now they are so insignificant. Somehow looking at these bloodied nails, a switch flipped. I can no longer ignore my emotions. I can no longer deny my broken heart. I can no longer say,
“It could have been worse.” It just keeps on coming.
The physical, emotional and psychological pain I have watched Kyle endure this past year as a result of Stevens-Johnson Syndrome is pain I could not have imagined. The utter despair Dave and I felt as we watched all the doctors try to figure out what was going on was so frustrating that initially I quietly unplugged my emotions. I had to. I had to get us through each day. I had to be there for my family. Kyle was breaking right before our eyes and we were all completely terrified. Kyle’s agony kept me silent. I kept my tears quiet. I kept my despair out of his hospital room. When others broke down, I asked them to stop.
“You are scaring him. And he does not need to be scared.”
The week before I took Kyle into the pediatrician he was home with a cold.
Kyle October 2010
On Tuesday, October 19, 2010, Kyle came home from school and said he was not feeling well. He sat on the couch and almost immediately fell asleep. Eli’s Parent Teacher Conference was at 4:00. Dave came home from work to attend the conference too. The three of us left while Kyle remained asleep on the couch. When we returned an hour later, Kyle was still asleep. Kyle never takes naps. He felt warm and sounded like he was getting Croup. Because he has a long history with Croup and the Croup getting really bad really fast, I decided I should take him into a doctor. Usually I would take him to his regular Salt Lake City Pediatrician, but because it was almost 6PM, the SLC Pediatrician’s office was closed and I did not want to end up in the ER. Kyle did not need to suffer. I called the local Pediatrician. Even though he was a new patient, she was happy to see Kyle.
By the time we arrived at the doctor’s office, Kyle was much worse. His fever was 102, he could not catch his breath, he was so pale and was totally freaked out. His throat hurt. His voice was hoarse and he sounded like a very sad baby seal.
The doctor thought he had Croup too. She tried to give Kyle a breathing treatment, which after a few seconds he refused. Then she gave him Oral Steroids and 600 MG of Ibuprofen. She prescribed two different types of inhalers and sent us on our way. I took him home. Then Dave drove over to the Pharmacy to fill Kyle’s prescriptions. Once Dave was home, we gave Kyle his medicine and put him to bed. During the night we closely monitored him. Kyle did our usual Croup-at-home remedy, which consisted of taking a long hot shower and then standing outside in the cold. Kyle still felt lousy the next morning and stayed home from school. By the afternoon he was feeling much better. By Friday, when my mom was with him, he seemed even better, yet his intense cough lingered.
By Sunday Night, October 24, Kyle began complaining about how his eyes felt like they had sandpaper in them. Then after his shower the next morning he complained about how his eyes had been glued together. Because he had already washed them outI did see his glue-y eyes. My motherly logic dictated that he was probably getting Pink Eye. Again, because I had not seen Kyle’s eyes glued shut, I wasn’t quite sure and even considered allergies. Sure, his eyes were red, but I thought he would be fine. Additionally, Kyle hates missing school. Because he had already been sick so, instead of keeping him home, I washed out his eyes and sent him on his way.
That same day, Eli was gone on a play-date. At 3:05 PM I arrived at after-school-pick-up to get Kyle. The very first words out of his mouth, and while he was fervently pointing at his eyes, were,
“Mom, my eyes really hurt! They sting! I cannot stand it! They burn!”
I felt guilty for sending him to school and could tell things were much worse. I immediately asked if he wanted to go to the doctor half expecting him to say no. Emphatically he answered,
“Yes!”
Because we had seen the Park City Pediatricians for Kyle’s initial Croup diagnosis, I called them again and scheduled another appointment. When we arrived, the office staff said the doctor was forty minutes behind. Because we live so close, I told them we would go home and then come back. In those short forty minutes and on our way back to the Doctor’s office, Kyle suddenly freaked out and blurted,
“Mom, I think I burnt my tongue from my hot cocoa! I can hardly open my mouth.”
Because we were going back to the doctor I asked if I could have the doctor look at his tongue too. “Yes! Yes! Please! It hurts. I don’t think I can open my mouth.”
By the time we arrived back to our appointment, Kyle could barely handle the eye pain. Oozy green stuff was dripping continuously from his eyes and down his face. He looked like he had pink eye on steroids. His face and lips were beginning to swell. The doctor took his temperature and it was normal. She said she thought he was suffering from a really bad sinus infection, a sinus infection that had moved from his eyes to his tear ducts. Huh? Honestly, even then, I did not think she really had any idea what was going on. She took a big guess and threw some antibiotics at the situation. I am told that usually big guesses work. Then she looked at his tongue and said it was not ripped. What she did see were three big sores underneath Kyle’s tongue. She attributed them to the sinus infection. She prescribed 2,000 MG of Augmentin twice daily and we were on our way.
Kyle
Kyle stayed home the next day. However, because my neighbor had planned a wonderful pumpkin carving party and because Kyle seemed better after resting all day, we let him go. Kyle, Eli and I went to the neighbors while Dave, who was also getting sick and who was leaving early the next morning for a business trip, slept. As the night progressed Kyle’s eyes and face became even more swollen. His lips looked as if a bad Plastic Surgeon over-injected him with Collagen. The other mothers, who I do not know well, noticed Kyle’s face, talked amongst themselves, worked each other into a frenzy and then mentioned things like Cellulitis, the dangers of terrible eye infections and of course, death. I was completely spooked! The women continued to insist that I rush Kyle to the ER. Regardless of what was really going on, somewhere deep inside of me I had a feeling that something very serious was wrong. I just did not know what.
Kyle’s Pumpkin October 2011
My neighbor graciously offered to keep Eli and because I knew Dave was not feeling well and also leaving for a business trip the next morning, I accepted. I took Kyle home. Instead of racing to the Emergency Room, I paged the pediatrician and then called my friend, who is also my doctor. After talking to my them, after weighing the history of the situation and listening to how Kyle’s cough sounded, they both encouraged me to take him to the Emergency Room at Primary Children’s Medical Center. The Pediatrician told me to prepare and pace myself in case they keep Kyle over night. She thought they would put him in the Quick Treatment Care Facility and give him IV Antibiotics to push the infection out of his system. I packed a bag for Kyle and gathered his favorite Blanky Car (Blanket) and Bully (stuffed animal). We were on our way driving down Parley’s Canyon in the very first big snowstorm of the season.
TO BE CONTINUED.
Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome I shake my Fists at You!
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. Continue reading “Part 1: Seriously? Where do I begin? Stevens-Johnson Syndrome…”
I have so much to say and I want to say it. There is just not enough information about this terrible disease. I need to share our story.
Indulgent is what I feel. My Brandi Carlisle Pandora Station is on. The song, “You belong to me,” plays in the background. I hear the words:
Oh I’ll be so alone without you
Maybe you’ll be lonesome too
Fly the ocean
In a silver plane
See the jungle
When it’s wet with rain
Just remember till
You’re home again
You belong to me.
Years ago my friend Katie died way to young of Leukemia. She was much younger than me. I often visited her in the hospital and became close to her and her family. When Kyle was in the hospital I felt Katie everywhere, especially in the hospital playroom. Right now I am in the middle of responding to an email from Katie’s mom.
As I try to respond, my throat tightens and tears fill my eyes. I feel indulgent and self-consumed as the sweet, sappy music plays. I feel weepy and breathless as my fingers click away.
I have to stop and write before this moment leaves.
. . . It was one of the many long hospital days. Gratefully, as they often did, one Kyle’s very best friends and his mother, came to spend time with us. His best friend was still recovering from a brain injury. Kyle’s friend empathetically had this uncanny ability to comfort Kyle in ways I simply could not. My mom was at the hospital that day and we all made our way to the hospital playroom. Kyle was walking with his mobile IV station, tubes and IVs attached. As I talked to my friend, Kyle and his friend built model airplanes. As we sat, I looked around at all the sick children, some dying and some about to go home. I was completely deer-in-headlights overwhelmed. I watched Kyle and his friend, Kyle’s face so swollen from steroids, wearing a tan baseball cap. Somehow when he wore this one tan baseball cap, given to him by another friend, Kyle’s face seemed to look even more swollen, his lips more bloody and sore, his eyes more profoundly injured. He looked to me like a Cancer patient. My thoughts went right to Katie and coincidentally so did my mom’s. I remember the many times visiting Katie when she came to Minnesota for Cancer Treatment, her face swollen from steroids, her sweet and hopeful enthusiasm. I told my friend about Katie and that she had died of cancer. I choked up and forced my feelings down. I was completely caught off guard with emotion. Maybe it was because my heart was wide open. Maybe it was because there really is something beyond this life. I am not sure. What I do know is what I felt next was a gift. I felt Katie, as if she were alive and sitting right next to me, hanging out and helping me let my guard down, something that has not been easy to do.
And then today, I felt Katie as I wrote her mom. Sweet Katie is one of the many unexpected gifts in this whole crazy mess. Each and every time I have thought about her since Kyle became ill, I am completely overcome. I don’t think anyone has any idea until now that this happens. Somehow Katie has been one of the only things that can propel me passed my stoic and frightened exterior. My heart opens wide and somehow I am able to allow those raw feelings and memories of me helplessly watching Kyle suffer surface.
For months I have been scared, confused and completely out of my depth. The indicator of how serious this has all been is that I am holding my usually unguarded feelings tight and close.
Today, and thanks for me finally taking the time to respond to my email, my heart is open once again. For how long, I do not know. I will take the moment and let myself remember. And now with some distance I am beginning to look back and see how absolutely horrifying this experience was. The moments are opening up and revealing themselves to me and I am grateful. These moments have patiently waited to show themselves and I am sure they will continue to do so.
In the safety and silence of my home, I can now see Kyle attached to his mobile IV standing in the hospital hallway, wearing sunglasses and screaming, I mean screaming at the top of his lungs,
“MOM, MOM, MOM, IT HURTS SO MUCH,” followed by, “MOM YOU ARE WALKING TOO SLOW,” immediately followed by a, “I CANNOT BREATHE! MOM, DO YOU HEAR ME? I CANNOT BREATHE! MOM!”
In a state of shock I stood there, in a random hospital hallway, burned out, watching my boy, helpless, his face, his eyes, falling off from the inside, feeding tube inserted down his nose, IV attached in his arm and irritating the hell out of him. And then the gentle Med Tech touching Kyle’s arm, softly pleading,
“Kyle, Kyle you need to be quiet.” With Kyle responding even louder than before, “I CAN’T! I CAN’T! I DO NOT UNDERSTAND! HELP! HELP! HELP! HELP! MOMMMMMMM, HELP ME!” She gently continued, “Kyle, you have to. You are scaring the other patients.”
We made our way across the floor to the hospital patio. Kyle screamed, spit and continued to flip out. We grabbed a box of Kleenex from the Coffee Cart Lady. Thank goodness for those boxes of Kleenexes. They were everywhere. He tried spitting on the floor. He spit outside. He did not stop spitting. He was mad and he spit. The blood and tissue he spit were so gross. They looked akin to Zombie-Flesh. At that moment I could not see how absolutely bad it was. I could not anticipate the months he would suffer; the months he would continue to lose massive amounts off skin tissue. I could not. What I could see. What I could see in that moment was that Kyle was out of his room. It had been almost two weeks since he had been out of his room. That walk, as brief and crazy as it was, was the first time Kyle had moved, had left his bed, the complete darkness and silence of his room.
Kyle had a rare form of this disease. It attacked his internal organs, the inside of his mouth, nose, throat, eyes, eyeballs, lungs. He required a feeding tube. They want to do a PICC line instead, but strong Kyle refused. Because he did not have the usual outside sloughing of skin, the Stevens-Johnson Syndrome was really hard to diagnose. Because they assumed he was sick from Mycoplasma pneumonia he currently had. The hospital continued to give Kyle Toradol for the pain. Eventually, they surmised that Ibuprofen (Toradol is in the same NSAID family as Ibuprofen) was the most likely cause of Kyle’s SJS. Consequently, Kyle had two cases of Stevens Johnson Syndrome.
Stevens Johnson SyndromeStevens Johnson SyndromeStevens Johnson Syndrome Photo Credit: Mike Sumsion Photography
PS. Kyle also burned from the inside out. That being said, heis so fortunate. It could have been so much worse.
I just took a bite out of my horribly tasting, yet very juicy Fuji apple, which is a complete bummer because Fuji apples are one of my favorites. Apple juice squirted all over my screen and as I wiped the splatters with my shirt, I kept thinking, “Did I really ever have anything to say?”
Seriously, it has long enough that I cannot really remember blogging or better how I blogged. The words are not flowing and I cannot find the beat. I keep eating my apple, mostly out of guilt. I have had nothing healthy to eat. My punishment: I must eat this disgusting, dirt-tasting apple. Continue reading “A Kind of Where Have I Been . . .”
