"Its called Kawasaki Disease. Yes, just like the motorcycle."

I'm writing this for two reasons. One, because all the details are still fresh in my mind, and two, because I desperately want to help bring awareness to an illness that is somewhat rare. I posted on my personal facebook page that our oldest daughter, Maggie, had been admitted to the hospital for suspected Mononucleosis. That was Monday, June 30. Here's what happened after she was discharged. Well, actually, here's the entire story (brace yourselves, its a long story):

Thursday June 26, I brought all three of the girls to a local restaurant that has a pretty nice play area. Lots of space walks and games to keep them busy. We were meeting a few friends with their kids for lunch, and although it was crowded, we still had a great time. The next morning Maggie woke up complaining of a belly ache. She ate breakfast, so I thought it was just a passing thing. But by 10am, she was throwing up and had two bouts of diarrhea as well. I waited a while, and then offered her some water. She said she was starving and felt sure that her belly was better. She had a few bites of applesauce, but then my poor baby got sick again. After getting her bathed and her clothes changed, I tucked her into bed, and went back to the front of the house to keep an eye on the other two girls. I had been running back and forth between checking on Maggie and making sure Mollie and Adeline weren't getting into anything, and just as I finally got everyone settled, my phone rang. I immediately knew the number and my stomach sank. See, we are trying to sell our house before we relocate, and whenever I get a call from this number, I know that I'm about to have to speed clean the entire house so that someone can come see it. I mean, you can't walk around all day praying for someone to buy your house and then turn them down when someone calls to see it, no matter how inconvenient the circumstances. SO, I ran around for the next 3 hours cleaning the house, checking on Maggie and then cleaning up whatever mess the two little ones made behind me. Thankfully, my mom showed up to help, and within a few minutes we had packed everyone up to head to Grandma and Paw Paw's for a sleep over. We got to my mom's and although Maggie hadn't thrown up in hours, she was still feeling nauseated. I decided to just camp out on the floor of the bathroom with her until her tummy settled down. I curled up next to her and felt her forehead. She was burning hot. I took her temperature. 101.4- and this is important. Friday was day 1 of fever. She finally ate a popsicle, and some soup, her fever came down, and by the morning she seemed to be feeling a little better. I packed the girls up to head back to our house for a day to rest and relax a little, and to be honest I spent a good part of the day kicking myself for taking them to the indoor playground on Thursday. I never go to places like that because I've always been terrified of them picking up some kind of stomach bug or some other disgusting virus. I'm paranoid about those things, and trust me, I know its ridiculous. You can't live in a bubble. You can catch those things anywhere. I've heard it all, and that was what I was telling myself when I agreed to go. I waited all day for the next person to start complaining of a belly ache. My ultimate fear was realized a few months ago when each one got a tummy bug on different days, and each on a different surface in my house. It was a nightmare and I thought for sure the next one to puke would show herself any second.

Saturday we spent inside in the air conditioning, and Maggie seemed to feel okay, I suppose. They played quietly and she laid around a good bit. We made "slime" from a pinterest recipe, and they happily played for a little while with that. To be honest, I was so tired from the day before that I spent most of the day counting down until bed time. I was glad to make it through with no new sick people in my house. I patted myself on the back for somehow keeping Maggie quarantined effectively and keeping the other two from getting sick. If I would have only known....



Sunday morning Maggie didn't seem to feel good or bad, just sort of blah, somewhat cranky and a little emotional, but nothing that concerned me too much. Then around 1pm she started complaining of her throat hurting when she would swallow. I gave her a little Motrin and didn't hear much more about it, until bedtime, when she started saying it was bothering her again. Another dose of Motrin, a cup of water on her nightstand, and I tucked her in for the night.

Monday morning she slept in just a little, so after I got up with the baby and Mollie, I went in to check on her. I walked in to see my beautiful fair skinned little girl sitting up in her bed, her face beet red, eyes swollen, holding her mouth open. She could hardly talk, and managed to croak out the words, "mama I barely have any water left in my cup." I ran over to her and felt her head. Of course she was hot- I could see she had a fever from across the room. I checked her temperature, and this time watched as it skipped several degrees at a time. It finally stopped at 102.7. She told me that her throat hurt so bad she couldn't swallow, and her tongue was hurting terribly too. She wouldn't swallow and her lips seemed tight and dry. I thought we were dealing with strep, so I made an appointment for her to be seen later that morning. My mom came over to watch Mollie and Adeline, and I headed to the doctor with Maggie. Two and a half hours after her first Motrin dose, her temperature was still above 101.

We gave her a dose of Tylenol in the doctors office and we all agreed we thought it was strep throat. After swabbing for strep and flu and both coming back negative, I started to get nervous. Maggie was still very hot, and she was becoming more and more lethargic and weak. She would barely pick her head up of the table when the doctor came in the room. I could see the pediatrician was feeling uneasy too, and I knew she was concerned when she sent us over to have blood work done. I thought for sure Maggie would wake up and fight me and the phlebotomist once that needle went in, but her weak little body hardly moved. All she did was let out a low "owwwww" and then she went back to sleep. I could see something was happening with my girl. She had never been that sick before, and the more time went by the more I knew we were dealing with something bad. We went back to the office, and the pediatrician said that she felt fairly confident we were dealing with mono and it was really taking its toll on Maggie. She wanted to give her two Rocephin shots in her legs in the off chance that it was a bacterial infection, and then discuss possibly admitting Maggie for dehydration. In the meantime, the nurse came in to check her temperature, and I noticed some petechiae under her arm. We pulled up her shirt to see a bright red rash all over her back. It looked like a tight red lace, almost like a severe sunburn. She was given a hefty dose of Benadryl to slow down any potential reaction from the Rocephin, or really whatever was causing the rash. I told her doctor that although I haven't worked in a while, I was a pediatric nurse, and I felt comfortable that I could get Maggie to increase her fluid intake. I would rather sit next to her and tell her every 10 seconds to take a sip, than have to admit her, especially just for fluids. She agreed and said "if Maggie can finish this little cup of water you can take her home and get her to increase her fluids from there. If she's not drinking within the next two or three hours bring her in." Well, Maggie took three sips of her water and threw up everything that she had to drink that day. There was my answer. She was admitted for dehydration and possible Mononucleosis. Thank God we were in Louisiana for this. My mom and dad happily took Mollie and Adeline off my hands while I stayed with Maggie in the hospital. Poor Chris was in Kansas City working this whole time. Once Maggie was admitted, there was no question, he was flying home as soon as he could.



Her face was puffy and red, her eyes were bloodshot (I attributed this to being exhausted and sleeping off the Benadryl), and she had a thick white coating on her tongue and lips. I felt stupid for ever trying to talk the pediatrician out of admitting her. It was so obvious to me now how badly she needed fluids. After a night of IV fluids, Toradol for pain, and her fever constantly creeping up and then inching down, Maggie woke up the next morning looking a little tiny bit better. Her initial mono test came back negative, but we still thought it was mono because many times that particular mono test can show a false negative. She was still weak and not looking good, but the on call pediatrician and I agreed that if she was able to increase her fluid intake and improve throughout the day they would let her go home. By the evening, her energy level drastically increased, she was eating a little, and drinking water and eating popsicles. She looked better, but something still didn't feel right. By the time we got her home, her temperature was up to 101.6.

Thank God for the wonderful doctors at Pearl Acres Pediatrics, her doctor wanted to see Maggie first thing the next morning to check on her. We woke up Wednesday morning to a VERY cranky and VERY angry Maggie- so angry I started calling her The Hulk. Her tongue was so sore that she couldn't even take a sip of water without cringing. I gave her Tylenol for her pain, in hopes that it would give her enough relief for her to be able to drink fluids. When we arrived at the pediatrician's office, she was itching her entire body from the rash that was still on her back and had now spread to the rest of her body. I put her onto the table to be examined, and when she took her shoes off, I noticed something about her feet that sent me straight back to nursing school. The skin was peeling off of the bottoms of both of her feet. It wasn't extreme, but they were definitely peeling. And let me just tell you, in nursing school, there are a few "key phrases" that stick out in every student's mind, phrases that make their way onto your tests, phrases that come up on the state board exam to obtain your license. "Skin peeling off of hands and or feet" is one of those such phrases. And instantly I knew what her doctor was going to say when she saw her. After examining her, without hesitation, her doctor wrote direct admit orders for us, and for us to see a cardiologist upon arrival. And then, there it was, just like I knew she would say: I think Maggie has Kawasaki Disease. She'll need some additional blood work and an echocardiogram to confirm it, but she has all the signs.

We went home, packed a bag, dropped poor Mollie and Adeline off to my parents again, and headed into New Orleans. I worked at Children's right out of nursing school, so I felt confident that our girl was going to be taken care of, but of course I was googling the entire way into the city, trying to remember every detail that I could about it. I remembered that its treated with high dose aspirin, and I could remember it was somewhat serious, but that was it. I couldn't remember anything else. And I couldn't find much either... which is probably a good thing. Dr. Google is an awful beast. I called my incredible cousin, who is also a pediatrician at Children's, and told her we were on our way. Luckily she was in the ER that day, and was there when we arrived. There is no way for me to describe how thankful I am to Maggie's pediatrician, to my amazing cousin, and to the rest of the Children's hospital staff for being so knowledgeable, and for being so genuinely concerned for Maggie's health. Her case was puzzling, and at this point, we weren't 100% sure hat she had. Thank GOD her echocardiogram came back with no damage to her heart at this point, but she's no where near out of the woods. She was presenting clinically at this point like either Adenovirus and Kawasaki Disease. The plan at that point was to run full blood work panel, to see how her ESR and CRP looked, and to run a viral panel to test for Adeno. Around 10pm, one of the doctors came in to tell us that the viral panel came back negative and that Maggie did not have Adeno. The next step was to treat for Kawasaki Disease, which would be an infusion of IVIG. She tolerated the infusion well, but developed a severe headache, a 102.2 fever and was throwing up within a few hours after it was completed. She became extremely irritable and refused to take any medication by mouth to treat her headache. We watched our beautiful, vibrant, smart, incredibly funny little girl literally writhe in pain on her hospital bed from the severity of her headache. Our hearts were broken. We were on Day 6 of her being completely miserable, with very little to relieve her pain. Finally, she started feeling a little better, but only after throwing up her first dose of Tylenol. The doctors were confident that the headache, fever and vomiting were side effects of the IVIG, and they would watch her for another 24 hours before making the decision as to whether or not they would do a second infusion. 24 hours later, she hadn't developed a fever, and had no other symptoms aside from extreme exhaustion, and a pretty scrawny appetite. They released her Friday afternoon, exactly one week from the day her symptoms began.

Kawasaki Disease is an illness that absolutely must be diagnosed within the first 10 days after symptoms begin, or severe irreparable heart damage can occur. Follow your intuition. We were lucky enough to have doctors that are very concerned and cautious regarding the care of their patients, but some kids aren't so lucky. If you feel like what your little one has in more than just a virus, and they develop any unusual symptoms, don't just brush it off. If they have fever persisting for longer than 5 days, and two or more of the following symptoms: red, swollen, extremely sore strawberry tongue; peeling, swollen hands and or feet; and what looks like pink eye without drainage; rash; and swollen lymph nodes they might have Kawasaki Disease. Its an inflammatory response of the body, not contagious, not genetic, and at this point they have no idea what causes it. (Which means she didn't catch it from the icky play place!) It is the leading cause of acquired heart disease in children. That means Maggie will likely have to see a cardiologist on a yearly basis (at least) to be sure that the illness didn't cause heart damage.



Maggie is looking better every day. Her appetite is returning, and she's regaining more and more energy every day. Its probably better that Dr. Google wasn't giving me any good answers on the way to the hospital that day, because since being discharged, we have learned that left untreated, KD can cause coronary artery disease, coronary aneurysms, and in some cases it has been fatal. Chris and I were terrified for our precious daughter. I was reluctant to share this story because I felt like it got to be too personal to put on facebook. But once we were "in the clear" to a certain extent, I realized that we had to share this. We have to bring awareness to this illness, because as "rare" as it is, one of my close friends tells me that her son, who is one of Maggie's best friends, also had it. That means it can't be that rare. This illness can be extremely serious if its not caught in time. Be aware of the symptoms and look out for them so that if by chance your little one does get sick, you can catch it within the ten days to treat it effectively and prevent serious damage. Our babies are the most important part of our lives. We protect them, we'd do anything for them. I am still in shock to a certain extent, that this even happened. That I held my baby down so she could have an IV inserted, that we have to play games and come up with songs to convince her to take her aspirin. I can't believe that had her pediatrician not been on her toes, very concerned, very in tune to Maggie, we could be in a whole different situation.

Oh, by the way, our house is being packed up and we are moving across this country to Chris' next territory this week- its changed a few times, but we're going to keep the actual location private ;). So when it rains it pours. Our stress level maxed out about 4 days ago, and we are trudging through this insane time in our lives by the grace of God. It seemed as if the Gospel this morning must have been talking right to us when he said "Come to me all who are weary and burdened, for I will give you rest. Take my yolk upon you and learn from me, for my yolk is easy and my burden is light." If it were not for our faith and the doctors taking care of Maggie, we would be in a completely different place.

www.kdfoundation.org