Saturday, January 26, 2013

Kawasaki Disease Awareness Day ~ Paige's Journey


Today is Kawasaki Disease Awareness Day. Today is the day I share Paige's journey at the beginning of her diagnosis. A fair warning to my reader's, it is raw & full of emotion from my perspective.

Paige's KD Story

It had all started on a Saturday night in October '06. While I was getting my 9 month old daughter, Paige, ready for bed, I noticed 3 red marks on her thigh. At the time, we lived in a town house style apartment next to a mulching factory, so we had some funky looking spiders, which is what my husband, Josh, thought they were. Of course the next morning I had picked up a catering shift at the restaurant I had worked at. When I went to change her diaper after she woke up, I noticed that those three red spots, were now a rash that had spread throughout parts of her bottom half. I informed Josh before I left for work & nervously went on my way. When I was working, I had described what it looked like & people suggested either a spider bite or an allergic reaction. Both of us had thought the same, so Josh went to the store to get some Dreft (I had just switched 2 weeks prior to All Baby) & some bug bombs. When I got home after working, we started the wash & he set up the bombs (1 on every floor). We went to a local restaurant with family to help pass the time we needed to from the bombing. While at the restaurant, we commented that it must be the detergent, because her rash was spreading northward. & it was there that I noticed her ankles were a bit pudgier than usual, but I thought it was from her outgrowing her socks & put it in the back of my mind. After the restaurant, we left Paige with my in-laws, while we went home & disinfected from the bombings. All hard plastic toys went into a bleach water mix & then rinsed & sanitized again with a Lysol spray. Other toys got a Lysol wipe down followed by a spray. We worked hectically for an hour before Josh left to go pick up Paige, I stayed home to do more. On his way home, he called me & told me to pack a bag & get ready to go immediately when he got home. We were taking Paige to the hospital because she started to swell up & we were concerned for her airway. I frantically called a co-worker to see if she could cover my opening shift the next day & also informed my bosses of the possible change. When Josh & Paige got home, she looked awful. She was swollen & you could immediately tell. We went to the hospital she was born in & were taken to the Peds ER. Countless pokes, prods & x-rays were done to figure out what was wrong. We were there for 3 hours with still no answers. A male nurse, while moving us to the regular ER (the Peds ER closed at night) had mentioned a possibility of Stevens Johnson syndrome (whatever that was!) & left us there for the Dr. to return. A total of 5 hours later, Paige was being admitted into the Peds unit. I felt so helpless. I sat there in a hard & uncomfortable rocking chair, staring at her in the crib. I did not want to take my eyes off of her for fear that something horrible would happen if I fell asleep. I think I dozed off here & there a total of 90 min. that night. The next couple of days, is a blur of countless blood draws & questions. The hospital staff had no answers. She was taking the Tylenol & ibuprofen on their scheduled times, as well as Benedryl every 8 for her swelling which was still very prominent. By this point, she had a fever of 103+ & her rash, which now covered most of her body except her back & face, seemed to mutate from one form to another. 


Eventually, (& after asking if we needed to go to another hospital) her team of Dr.'s had concluded she had Multiforme Erythema. We were bombarded with student doctors (it was a teaching hospital) & nurses. We signed a waiver allowing them to take pictures & document her case since this was never seen there. One nurse even woke me up when I managed to doze off at 3 o'clock in the morning to look at her & ask questions because she had only read about this in the books. Around this time, Paige's hands began to swell to the point that they blistered. She couldn't even pick up her teddy grahams (her favorite at the time) to eat them. We were put on burn watch for the children's hospital (they have a burn unit there), roughly 30 min. away. The blisters on her hands were consistent with a 3rd degree burn. Had they spread to the rest of her body, roughly 50%-80% of her body would have been covered in 3rd degree burns. Luckily for my baby, the blisters never spread & began to recede within a couple days. I remember looking at her & crying, that was not my baby. She was, but looked nothing like herself at this point. We were transferred the night of day 4 to a different room due to construction taking place on the floor above. By this point, we had only left the hospital a few times, leaving Paige to be watched over by family & close friends, so that we could retrieve more clothes & take a quick shower. I would not leave that hospital again until discharge. On that 4th night, after Paige had received her doses of Tylenol & ibuprofen relatively close together, her fever had gone down the tiniest bit & then was higher than before the doses. On my way to the kitchen on the peds floor, I passed her Dr. before he left & mentioned it to him.He said they would take a closer look in the morning. 

That next morning, they informed us they were going to do an echo cardiogram & an EKG. Why would they be doing tests like this?! I went into the bathroom to wash up as best I could & put on some clean clothes. This is when I heard people speaking to Josh in the room. I was furious! I thought, 'They better not touch my baby until I'm out there!!' I was too late, they were starting the tests. I tried to keep up as best I could, but by this point I was in utter shock. I caught a few words, coronary aneurysms, life saving medicine, Kawasaki disease. They wanted to take Paige to get her IV inserted (they had tried before & failed, but she was eating & drinking, so they thought it OK) & to give her a catheter (they also tried this in the ER, but failed). I had a few moments to make a few phone calls. I called my boss, who was planning on visiting again before her shift. I blurted out what they said & told her I had to make a couple more calls before they started their proceedings. I also called my parents & my mother-in-law before we had to go. There were 3 nurses & the 2 of us, attempting to hold Paige down for her catheter & once again, my 9 month old baby was no match for 5 adults. The Dr. concluded that it wasn't necessary as long as she continued to eat & take in fluids. We were then transferred to a monitoring room near the nurses station. We were told it would take 12 hours for the entire dose of IVIG to make it into her system. The nurse explained it as "an expensive immune system in a bottle." Her dose of aspirin to thwart blood clots also began, 1 chewable children's aspirin every 12 hrs, with only a 1 hr window either way. & she was also hooked up to countless monitors to carefully watch her intake of her meds. Shortly after this, Josh's whole family had shown up to start waiting with us way before it was time for them to quit working. My boss who was going to come before her shift also came later with a co-worker (who sang many songs to Paige to keep her occupied) & her boyfriend. After I got off the phone with her earlier, she had googled what I said & printed a paper out for all to see at work. When she came, she brought food to eat, a collection they took up at work with a card from everybody & a personal gift from her to help out. We were so thankful, we weren't sure how long we would be in the hospital. But Paige took to the IVIG & after the careful period of monitoring afterward, she was discharged 1 week after our initial trip to the ER. The next couple of months were still rough for us. We had what seemed like endless appointments for follow ups, blood draws & echos. But her heart was untouched by the Kawasaki's. However while she was taking her aspirin (2 a day for 2 weeks, followed by 1/2 a day for 8 weeks), we were on a new alert. We had to be extremely careful of who & what she came in contact with for fear of her contracting Reye's Syndrome, which could be fatal if not caught immediately. & although she came out unscathed, she still receives follow up echos every 3 years for cautionary measures. It has been over 6 years since our ordeal & I remember it vividly. & while she doesn't remember the initial onsets of KD, she's a champ at needles (most of the time) & echos & very grown beyond her years.

Paige & her KD t-shirt a few years ago.

About Kawasaki Disease:

Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon. KD is more common in boys than girls, and the majority of cases are diagnosed in the winter and early spring. It is not contagious.

Kawasaki Disease is characterized by an inflammation of the blood vessels throughout the body. There is no specific test for KD; doctors make a clinical diagnosis based on a collection of symptoms and physical findings. 
Early symptoms of KD include:
Fever that lasts for five or more days & is unresponsive to meds
Rash, often worse in the groin area
Red bloodshot eyes, without drainage or crusting
Bright red, swollen, cracked lips, "strawberry" tongue, which appears with shiny bright red spots after the top coating sloughs off
Swollen hands and feet and redness of the palms and soles of the feet
Swollen lymph nodes in the neck
NOTE: Paige had atypical or incomplete Kawasaki Disease. Meaning that she did not have all of the symptoms.

It's echo time!
Paige, left (KD survivor). Colson, middle (KD survivor). Bella, right (KD survivor).

Without treatment, about 25% of children develop heart disease involving the coronary arteries. Timely diagnosis and treatment (which usually includes intravenous gamma globulin within a 10 day window) is highly effective in preventing coronary complications. Doctors continue to study the long-term outcome of children who do not appear to have coronary involvement.

Paige & her bracelet <3

For more information on Kawasaki Disease, visit The Faces of Kawasaki Disease & The Kawasaki Disease Foundation.

You can also read the journeys of other Kawasaki kids here

Please, learn the symptoms & tell others. You may help a child one day just by knowing them since Kawasaki Disease is often misdiagnosed. 

Paige's heart shaped stone & note from Linda,  mom to Johnny, a fellow KD survivor.









6 comments:

  1. what a story. so glad she is still doing good!!

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  2. I can't imagine going through what you did. You are a strong woman, Melissa. Paige obviously takes after you.

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  3. Wow that is unbelievable story Melissa, I am so glad to see her looking so healthy and vibrant now! She truely is a champ!

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  4. Your relentlessness to get the word out about KD is inspiring. Paige is so lucky to have you as a mommy.

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  5. What a crazy story! Bless her heart

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