Wednesday, October 29, 2014

Kawasaki Disease

Last week, I was feeling curmudgeonly about Halloween. My feelings of irritation toward its existence occupied way more space in my mind than it needed to. On Thursday morning when I had some free time before Matthew woke up, I even blogged about it. Now, I can't spend any energy at all thinking about Halloween.

Around lunch time on Thursday, Matthew was complaining that his back hurt. Thursday evening, we were in the emergency room of the Children's Hospital and by the wee hours of the morning, we were admitted. It turns out, Matthew had a rare condition called Kawasaki Disease, which is a virus from unknown causes that attacks the arteries, and ultimately, the heart.

This story is very long, but I think it shows God's incredible attention to detail, so I am going to try to spell it out. I also hope that if anyone googling needs some information on Kawasaki Disease, this may help them.

Two Saturdays ago (approximately 10 days ago), our family joined our good friends for our annual tradition at the Pumpkin Patch. Matthew behaved and looked 100% normal.

The next morning was Sunday (this is Day 1--the distinction of which will make sense as you read). When he woke up,  his bottom was red. We thought it was diaper rash because there had been some hay in the pumpkin patch that got in his clothes and diaper (side note, I think he and his best friend have made a pact to go to college in diapers). I put him in the bath for a while, then got him ready and we went to church.

When we picked him up from his class at church, he felt warm. But it was a hot day and our church building is often warm so we didn't think much of it. He was a little tired, but otherwise seemed fine. Some friends invited us to lunch and we joined them. During lunch, Matthew went downhill, very quickly.  He became lethargic and irritable and grew hotter by the minute. We quickly wrapped things up and came home. When we got home and undressed him, the rash had spread all over his body and he had a fever of over 104 degrees.  I gave him a cool bath and put him to bed and he slept all afternoon. That evening he was still warm, covered in rash, and tired, but had no other problems.

The next morning (day 2), he started complaining of sharp stomach pains and vomiting. He continued to have rash and fever. The pediatrician was able to see him first thing that morning and she concluded that it was just a virus. Matthew has developed rash with illnesses before. I thought the vomiting might have been from fever--I know that I vomit when my fever gets too high.  She checked him for strep and a UTI both came back negative. I took him home and kept his activity level low and we stayed here at home. He did not have much appetite. He was extremely irritable.

By Tuesday and Wednesday (days 3 and 4), the rash had gone away but the fever remained and I noticed he was still extremely irritable. At the time though, I chalked it up to him being tired (he'd had night wakings every night for more than a month--we were both exhausted!) and being 3.

On Thursday (day 5), he woke up complaining of pain in his diaper area. He was still listless, irritable, and warm. My mom had come to visit that morning--a visit he had been looking forward to for weeks, and he couldn't be rallied to excitement. At lunch time he started grabbing his back and complaining of sharp pain. I got him calmed down and put to bed for a nap. While he was sleeping, I called the pediatrician, whose nurse said we could return the next day for another urinalysis. I pressed her, knowing that UA results take a few days and we were going into a weekend. I asked her what else they could do on site and the end result was not much in the way of diagnostic tests. If the rapid test for the UA showed nothing, we'd wait for the complete results. If they suspected something, they'd send us to an imaging center for an X Ray. I knew we were heading into a weekend and those wouldn't be read until at least Monday, either. She said that if he woke up from his nap and was still in considerable pain, the best way to get tests immediately was to go to the pediatric Urgent Care run by our local Children's Hospital.

When he woke up, he was complaining of pain more frequently and more emphatically. Quickly, he was inconsolable. His eyes looked bloodshot, but I figured it was from exhaustion and crying. The skin on his bottom had begun to peel like a sunburn. I packed up a backpack with a few toys and we headed out. I was expecting them to diagnose him with a UTI or a kidney infection. I figured we'd wait around to see a doctor for a while, get diagnosed, and be sent on our merry way with a pain killer and antibiotic.

The doctor saw us rather quickly. He initially suspected some of the same things-childhood virus, UTI, and a few other things I can't even remember. However, as I talked and mentioned the things I had seen over the week, the doctor's body posture changed. After a while, he said, "I think I know what this is but I haven't seen it in a very long time. I need to excuse myself and read on it before I tell you anymore." A little while later, he was back, with instruction to go to the Children's Hospital ER. He told us that we would probably see the ER doctor, who would probably admit us, and have us see a Cardiologist and an Infectious Disease Specialist. Wait. WHAT? What happened to the UTI I was certain he had? That I could handle. A Cardiologist? For a 3 year old? My head was spinning. My mom stopped at home for some pajamas and other essentials for Matthew and I and met us up there.

In the ER, we saw more doctors than I can remember. My husband said that there must have been some sort of note in the doctor's lounge: "Hey! Go check out bed 6 for something you've probably never seen before!"  Around 4:00 am after tons of blood work, a nose and throat culture, and another UA, we were finally admitted, with all of the ER doctors and the hospital admitting doctor concluding that the diagnosis of Kawasaki Disease was correct. He and I slept for a couple hours in his room before the doctors and nurses started coming around at 7:00.
Matthew and the best daddy in the world, sleeping in the ER gurney while waiting for admission.

Another new doctor visited us, who said she thought it was Kawasaki but that the Infectious Disease doctor would need to confirm. He came later, and confirmed it, as much as he could. They explained that there is no test to confirm Kawasaki, but all the tests they ran ruled out everything else, and other things they discovered in his blood and fluid showed signs of KD.  The only test to confirm KD is after a patient has already suffered irreparable damage so they can only make a clinical diagnosis and treat accordingly.

Kawasaki Disease is a virus that inflames the arteries, and if left untreated, can cause coronary aneurysm, heart attack, or other heart damage. They have no idea what causes it.  It is very rare. It primarily affects young children, and boys more than girls.

The treatment is a 12 hour infusion of IV Immunoglobulin that somehow, protects his heart. Then he has to be on an aspirin regimen, and continue to follow up with a cardiologist.

Because they had to culture Matthew, he was in isolation for the first half of his hospital stay. Adult visitors could come and go, but he could not leave his room. Being trapped in 4 unfamiliar walls for days with a frightened, sick, tired 3 year old was very difficult. The first full day there was very hard. One of the doctors had said that the IVIG treatment was very uncomfortable and that Matthew would be very aware of it. He was overwrought from being tired, overstimulated from pain, and emotionally highstrung from being trapped. I was dreading the IVIG for him. My heart hurt so badly.  I learned that in times of great stress, I can handle the big things. I grew up in hospitals. I've literally spent months in them at various family members' bedsides. The big stuff, I was able to take in stride. But I broke down in tears when my little boy was crying for a toy and I had nothing to give him and the nurse I had asked 3 times for one wasn't getting off her duff to help. Apparently, my control-freak self is smart enough to know it can't control the big stuff, but then it over compensates on the small stuff.

The IVIG was ordered around 10:00 in the morning. But because of whatever black hole exists in all hospitals where orders go and hang out a while before they resurface, the treatment did not actually arrive and begin until 5:00 or 6:00pm. By that time, Matthew was so exhausted, he slept through all of it.  He didn't have to deal with the discomfort or the headache or the panic from feeling restrained.  Huge hurdle 1, down.

By the middle of the afternoon the third day, his cultures came back negative and they released him from quarantine. He could now go to the play room, the playground, the activity center, the cafeteria, on walks, and outside, utilizing all of the wonderful resources the hospital had to make the stay easier for kids. Immediately, his anxiety started to decrease. I don't think we returned to that room for 5 hours that first time we were released.

These are some of the very many God things I noticed:

-Because one of the main diagnostics of KD is 5 days of fever, the disease cannot be diagnosed until day 5. Treatment must begin by day 10 in order to have the best chance of coming through it without heart damage. Matthew was diagnosed on day 5. Treatment began on day 6. His diagnosis came at absolutely the earliest possible moment. If we had waited through the weekend and into the beginning of this week for lab results and/or radiology to come back after the weekend, we would have been to the 10 day danger zone mark.

-Though the disease is rare, the first doctor we saw had the experience to recognize it, and the humility to research his findings in his own unfamiliarity.

-Phoenix Children's Hospital is one of the best Children's Hospitals in the country. The doctors we encountered were very familiar with KD and how to treat it. In reading some of the KD forums, many many parents and children have a very difficult time getting a correct diagnosis because many doctors have never encountered it and because so many of the symptoms are typical of the age and of other childhood illnesses.

-Matthew showed ALL of the hallmark signs of KD, on both his body and in his blood and fluids, making the disease as confirmable as possible without the heart damage that is the only thing that can verify 100%. Additionally, every single doctor who treated him (more than 10) agreed on the KD diagnosis. I really appreciate that there was no hesitation or wondering so they could just move forward with treatment.

-I really believe the Lord pushed me to take him to the Urgent Care that night. On their own, irritability, rash, fever, red eyes, and even some pain are normal in children going through threenagerhood, diapers and potty training, and growth spurts and growing pains. None of those things are concerning on their own and Matthew has had them at other times in different combinations and I haven't been alarmed. But this time, I distinctly felt the need to take him in, despite my usual bent toward "wait and see" when it comes to common colds and illnesses.

-I also believe the Lord brought all of the different symptoms of the previous week to my mind with exacting precision. He loosed my tongue to mention things that I didn't even realize I had taken note of. All of the information and the timeline I gave were what piqued the first doctor's interest toward KD. Had I not mentioned some of the things that had come and gone earlier in the week, we might not have had a correct diagnosis.

-He was able to sleep through his infusion

-He did not have a negative reaction to the infusion

-The infusion seems to have worked and so far as we can tell, he does not need another.

-His first echocardiogram was clear.

-On our third day there, he was released from isolation, which made the rest of the stay much much easier. They said that cultures can take up to 2 weeks to come back so originally they said he would be in isolation the entire time we were there. To be released from it early was a real gift and it really helped Matthew's anxiety.

-He manifested each symptom necessary to make a diagnosis, but each symptom lasted almost as short a time as possible. His rash and vomiting were gone in 2 days and he didn't get the pain until day 5. The symptoms appeared long enough to be noticed and noteworthy, but not any longer. I think this was a sweet mercy that he didn't have to be excessively miserable all week long.

-My mom "just happened" to arrive for a visit the day the hospitalization started, so she was able to help us with sitting with Matthew, doing things we needed, etc

-My dear friend was also available and brought my meds to me in the middle of the night and ran errands for me. People were kind to show love to Todd and I, too.
This was waiting on my counter for me next to my coffee pot when I got home (this was not one of the errands I asked her to do). 

-Many family members and friends came to visit Matthew. We learned while there that most children don't even have parents who visit them around the clock, much less other visitors. Matthew had an almost constant stream of people who wanted to cheer him up and distract him. I am so grateful to know my little boy is so loved.
Playing with one of the many gifts friends and family brought him to help keep the isolation manageable. This is after his infusion and we really saw him start to turn around. He was even singing to his tractors. It was so good to hear my little boy sing again. He was singing, "I love to dump the garbage in my backhoe, oh yeah!"

-My Mom's Church has a ministry called Wrapped in Prayer. A guild of ladies make quilts for people who are going through a hard time, and then they and others in the church tie knots to join the layers together. As a person ties a knot, they pray over the quilt and the person receiving it. Then the blanket can "wrap" the recipient literally, representing the prayers they are wrapped in. The group made a quilt for my little boy and the Pastor's Wife dropped it off at our home, along with a gift from the Pastor and his wife. The church shared some photos of their Sunday morning where people came to pray and tie knots. I've never met most of the people in the photos. What a beautiful way to show love!

-There is a nationally known KD research clinic just a few hundred miles away from here so we have access to expert care if things get complicated. I've already been in touch with a doctor there who has been so sweet to help us with a few things.

-KD is not contagious, so his best friend and her sister, who we were with the day before, and the kids in his Sunday School were not put at risk by being with Matthew.  It also means that as he has energy and stamina, he can still get out of the house now a bit.

-Our employees really stepped up to the plate and took over everything so Todd did not need to worry about the shop. The only thing he had to go there for was to sign checks for payroll. I am so grateful that we have kind and compassionate men working for us, who have integrity, initiative, skill, and work ethic to work and be proactive even when the boss is away and who really showed us love in our time of struggle. They even made Matthew his own "License Plate" wishing him to get well. They hand painted and etched this. This was another tears moment for me.

-Matthew is sleeping right now. This alone is a huge, huge gift because sleep has been so hard for him. He also took 2 naps the day we were admitted, which really helped when we were up until 4:00am waiting for admission.

Other things I don't want to forget:

One nurse asked him if his mommy gave him his beautiful blue eyes or if his daddy did. Matthew looked at her puzzled, and then emphatically said, "JESUS did!"  You go, little man.

Our friends brought him a milkshake. He woke up while they were there and I told him and he sleepily mumbled, "Oh, that's sweet of them."

On Monday, they released us to come home. It appears that Matthew is out of the danger zone. The recovery time from KD is months long. He'll require echocardiograms for the next several months and then periodically over the next several years. The treatment he received has been used for about 30 years for KD and so far, seems to have good long-term results as far as protecting the heart goes and those now-adults are still doing well overall.

The disease has 3 stages. Matthew is in stage 2, which is arthritis, GI problems, and skin problems. He's still pretty miserable. They tell me his brain is inflamed, as are his nerve endings, so he is hypersensitive and angry often. My understanding is that this stage can last up to 2 weeks. Then stage 3 is when everything starts returning to normal, but it can take 8 weeks. So we have a little bit of a bumpy road in front of us.

We'd love your prayers for our little guy. The hardest struggle for him is that he feels lousy and doesn't understand. His skin is peeling off in sheets and it scares him. He's on an emotional cliff most of the time and the littlest things set him off. He wants to do things, but he has no energy or stamina to actually express the pent-up energy and feelings he has. So then he gets frustrated, and he's already emotionally fragile from the inflammation. The doctors assure us that KD doesn't have a lot of long term affects but we've been reading that a lot of kids do have struggles for years thereafter. We'd appreciate prayers that his recovery is quick and permanent. While he's on an aspirin regimen, for him to get the flu would be extremely dangerous. He got a flu shot, but that may or may not be effective, given that flu season hasn't really started yet so they don't know if the strains in this vaccine are the ones that will be in the US this winter. We'd appreciate your prayers that he does not get it. He never has before and Todd and I don't usually get it either, but extra prayers would be appreciated.

The hardest struggle for us as his parents is to know how to comfort him. I ache to take away his pain. It's also very difficult to navigate the landmines of his mood and the extreme anger, and comfort him and extend extra grace for him, without letting him be a total monster. When we know it's really truly not his fault that he's behaving this way, it's hard to discipline him for it. But we can't let him have carte blanche to be a monster, either. To be honest, our house feels rather like a war zone and we're on eggshells a lot. It's exhausting for us--I can't even imagine what it's like for him. Todd and I need prayers for wisdom on how to walk this line and our whole home could use prayers for supernatural peace. We're living on pancakes and grilled cheese sandwiches because at the end of the day, it's all I have energy left to make. He also can't always tell us what's bothering him so we need wisdom for being able to identify what's ailing him to be able to relieve it, in such a way that he'll accept help. Right now, he is very afraid of anything that even remotely resembles medicine.

This also affects our transfer. Because of the stress and being at the hospital, I forgot to take the last few days of pills so it changes the timeline for everything. It's possible that we can still course-correct, but it will depend on if my body cooperates. If not, we'll have to stop and start over. The date is no longer November 20. We won't know when it is until and unless certain things happen biologically. Now that I know we have an unknown amount of medical bills out there waiting for us, it was tempting to postpone again, but if we keep waiting for when the money can't be used on anything else, it will never happen. We're just moving forward in faith that God will provide.

Thanks for all your prayers for our little family!

Signs of Kawasaki Disease:

If your child has high fever (over 101) for 5 days in a row, AND any 2 or more of the following symptoms, please ask the doctor to evaluate him or her for Kawasaki Disease. Matthew had all of these symptoms at one point or another during the days and hours preceding his diagnosis.

-"Strawberry" tongue (red, swollen, and bumpy)
-Body rash that has no other cause, especially rash in the diaper area
-Swelling in the hands and/or feet
-Bloodshot eyes without discharge
-Swollen lymph nodes in the neck

Additional symptoms (but they're not diagnostic like the above ones). Matthew had all of these too:
-Extreme irritability
-Nausea or vomiting
-Peeling of the skin

For more information, go here:


  1. Wow! I'm glad you wrote everything out. What an incredible time you guys have had. Good for you on all of your hard work!


  2. Poor Matthew. Caring for him through so much pain, discomfort, and such has to be so hard. Praying for his quick healing. I'm glad to hear that nearly every doctor, etc. came to check him out. Having a rare condition myself (NAIT) I welcome any opportunity to educate. Hang in there - praying for God's perfect timing for your transfer!

  3. Wow. You guys are amazing. We're praying for God's hand of peace and rest to be on your home.

  4. I'm so glad you took him in and he's going to be okay. Praying for you!

  5. Jen, I will be praying for you all. I'm so thankful for God's protection and intervention throughout the past several days.

  6. I can't imagine watching my child go through that! Many prayers for you and Matthew.

  7. It is clear how the hand of God has been watching over you. I pray the fears of the last few days subside and sweet rest and peace take up residence.