Kawasaki’s Disease

SPOILER ALERT:  EZRA IS DOING FINE!  I don’t want y’all to read this and be worried the entire time.  Here’s a cute pic of him doing what he did a majority of the time.. watching Elmo.

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While we were in San Francisco (weekend of 11/7/2015), our son Ezra was getting sick.  Sheena’s mom was concerned that the fever wasn’t breaking, so she took him to the pediatrician on Saturday.  They determined that he had an ear infection and would have to take antibiotics.  A follow up visit was scheduled for Monday.  I took Ezzy to Monday’s follow up appointment and the doc was a little concerned about the fact that the fever still hadn’t broke yet.  A lot of symptoms of Kawasaki’s Disease was noted (red eyes, persistent fever, slight rash…) but they wanted to be sure.    She said, “if the fever doesn’t break by tomorrow morning, bring him in again and we’ll have to do additional tests”.

Tuesday morning comes and the fever is still around.  Sheena takes him in again and the doc recommends us to take him to Texas Children’s Hospital for further testing.  Sheena brings him to the Texas Children’s Hospital and I meet them up around 1pm on Tuesday.  By the time I get there, he’s already been poked with needles and examined by a bunch of docs and nurses.  Needless to say, he was sad and mad to be there.  Here’s what he looked like by the time I got there… exhausted.

 

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We waited in the exam room for about 2.5 hours.

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After the test results, there is enough evidence to treat him as if he does have Kawasaki Disease, so we get admitted and get a private room.

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Tuesday night, Sheena’s mom and brother come to visit.  While they’re visiting, I rush back home to grab a few things for us and also get Layla situated at my parent’s house.  While I was out, Janie, Jason and Justin Joy all come to visit.  Janie brought us some snacks to munch on while we were there.  At around 9pm, everyone leaves because visiting hours are over.

Around 1:30am on Wednesday, they began treatment of IV-IG for Ezzy.  It takes roughly 10 hours for the treatment to be completed and then there’s a 24 hour monitoring phase.  So we wait.  During the day my parents and Layla came to visit.  After the treatment, Ezzy was doing AWESOME!  He went from being so sad looking, with red eyes and a temperature of around 100 degrees back to his normal, sweet self… although still very bummed that he had to stay in the hospital.

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My cousins, Wes and Kasey came to visit, which was great.  We were simply sitting there, so it was nice to have a distraction.  We spent another night at the hospital, again for monitoring just to be sure he was doing OK.

While there, we explored the buildings at bit… it gets boring just waiting in a small room.

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But while in the room, he basically played with toys.

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Thursday morning, Ezzy had an Echo done on his heart (just to check on things to make sure all is well).  It went smoothly and we went back to the room to wait some more.  My parents brought Layla again because she was really missing us and wrote a letter to Mommy.  She even put it in an envelop and decorated it.

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She read the letter for Mommy as well.

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While my folks and Layla were there, our friend Manju came to visit.  Again, its nice to have company!  After a while we met with the docs and they gave us the stamp of approval to leave!

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Ezzy is doing awesome!  The docs still want to do follow up visits to be sure that he’s on the right path, but with all the conversations, it’s looking good!

So here’s the low-down on Kawasaki’s Disease.  We never heard of it.  Its very rare and usually found in Asian babies.  We only found it out because Sheena’s mom spoke to a friend about how Ezzy’s fever was sticking around.  That friend mentioned that her kid had Kawasaki’s Disease and we should be on the look-out for that, just in case.

Symptoms: long-lasting fever, red eyes, rashes and simply looking sick.

Outside of the rash, which sorta came and left, Ezzy had all of that.  The docs explained to us that Kawasaki’s Disease is treatable and curable.  It is simply where your white blood cells are thinking that your arteries are in trouble and needs help… so those white blood cells attack.  This can cause aneurysms in the arteries, which could be troublesome if it’s around the heart.  That said, the treatment consists of giving IG (which is a specific platelet of blood) administered via IV.  It’s non-evasive, but it’s essentially telling the white blood cell to chill out.

After treatment, Ezzy was back to normal.  Moving forward, we have to monitor his heart for a while just to play things safe.  Catching and treating it early is the key.

I usually don’t like writing about things of this nature, but I know that some of y’all have kids.  Kawasaki’s Disease is very rare and we only knew about it because Mom spoke to someone that went through it, so this is my effort of “paying if forward”.  If your kid has any of the above described symptoms, get them checked out.  The sooner he/she is treated for it, the better.

The docs and nurses at Texas Children’s Hospital in Houston are rock stars!  Although Kawasaki’s Disease is very rare, they see it a lot and even have a specialized team for it too!  We have an amazing medical center in Houston, so I feel blessed that we had access to the right people and tools needed to knock this out!  God is good!

2 Replies to “Kawasaki’s Disease”

  1. Thanks for sharing Saj!!!

    So glad to hear Ezzy is doing better! Praise God!!

    Like

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