Kawasaki Disease

Alex had a fever for four days.  He had a rash all over his body that was very itchy.  His lymph nodes were swollen and he had a "strawberry tongue."  His hands and feet were red and swollen.  His eyes were pink like pink eye.  He had a cough and stuffy nose.  He wasn't sleeping much, so he was tired, crabby, and miserable. After dealing with him being miserable for four days, we decided it would be best to take him into the ER.

They tested for strep which was negative.  They also took blood work which would help diagnose Kawasaki Disease along with all of his other symptoms.  The ER doctor and the Pediatrician that was on call that night both thought it was Kawasaki's Disease.  Around 10:00 at night we were admitted and sent to our room in Childrens.  The staff was so nice with making him feel at home.  They had a fleece tie blanket, a book, and a toy for him to keep.  Around 12:30 a.m. they began his IV treatment which is called IVIG.  It takes 1,000 blood donors for one IVIG treatment.  He had to be observed the first hour (he had a nurse bed side) to check for any bad reactions.  He responded well to the treatment.  He didn't go to sleep until 1:00 in the morning.  He had been up for nearly 22 hours and was extremely tired and overstimulated by all of the poking and prodding.  The nurse came in around 2:00 a.m. to check his vitals and he lost it.  He was kicking, screaming, crying, flailing his body, and trying to rip out his IV as well has rip off the EKG they had going on him.  We have seen him act like this before, and it's really hard to watch.  You feel helpless as a parent.  It took about half an hour for me to get him calmed down and I slept with him that night.

The night Alex was admitted.  Daddy brought us things to stay in the hospital and red books to Alex before bed.

His rash and fever were already subsiding by morning.  He had a little bit more energy to him.  We had visitors on Saturday which was a great way to break up our day.  He also had his first Echo-cardiogram done.  The IV treatment took 12 hours and then they had to observe him for 24 hours after it was finished. Monday morning he woke up with a bad headache and ending up throwing up.  We weren't sure if he was going to make it home that day, but luckily he did.  We were so happy to get back home.

Rhoslyn and daddy came to visit on Sunday.  Rhoslyn sat with Alex in bed during his Echo.  Such a good sister she is.

His journey doesn't end though.  Today he had his second Echo done and it showed that his left coronary artery is larger then the others.  He also has some fluid around his heart.  The Pediatrician didn't seem too concerned, but he will have another one done in 4-5 weeks.  If there aren't any changes or it worsens, we may be referred to a cardiologist for further testing.  He will also get his cholesterol checked once the sickness is gone.  He may also have follow up echo's and check ups in the years to come, just to be on the safe side.  Some children can suffer symptoms for months.  In rare cases children can get Kawasaki's twice.

They don't really know why children get Kawasaki's Disease.  They feel that Alex could have had a virus and his body just reacted to it differently.  Unfortunately, there hasn't been enough research done to find a cause.  It can affect inflammation in the arteries and blood vessels surrounding the heart.  Most children recover just fine, but it is definitely a scary situation to be in.  Alex has to be on aspirin to keep the blood thin and flowing.

Even though he does not have the fever, rash, red eyes, etc.  He is still dealing with symptoms.  He becomes very agitated very easily.  He is often tired.  A full day of school is exhausting for him.  His skin on his fingers is peeling off in sheets.  Children also tend to have joint pain.

Only 19 in 100,000 kids will have Kawasaki Disease!  It is the leading cause of heart disease in children. Sometimes it can even be fatal.  Alex has been such a trooper through all of this so far.  We are so proud of him.  It has been an extremely trying couple of weeks at our house and we aren't out of the clear yet.  We are so grateful for those that have given their prayers and help during this time.  Mom and dad have been on an emotional roller coaster with all of this.