Isaiah's Kawasaki Disease Journey

In the past I have often referred to our "new normal" -- the way in which we now live our lives, since Isaiah was diagnosed with coronary aneurysms.  Over time, this "new normal" has just become our normal.  Isaiah's scheduled medications are a daily reminder of his condition and Kawasaki disease seems to be ever present in my mind, but its effects have slowly faded to the background and just become part of the fabric of our lives.  I am often asked, "How is Isaiah doing?" and find myself automatically answering with a standard, "Great.  Everything is stable."  I do not feel it necessary to go into detail about Isaiah's latest test results or the health effects we deal with as a result of his multiple blood thinning medications.  In fact, I have become so effective at "glazing over" these details and get caught up in dealing with the chaos of every day life, that sometimes I actually forget what we are truly living with....unti...

January 26th, 2015 marks the 5th annual Kawasaki Disease Awareness Day.  I know many parents of KD survivors (myself included) and survivors themselves who are KD advocates and raise awareness on a daily basis.  I am sure there are people that wonder why we are so passionate about this cause, and given that it is considered rare, why it is such a big deal.  These are the reasons why everyone needs to know about Kawasaki disease: 1. It is often misdiagnosed.   Many of the symptoms associated with Kawasaki disease are also associated with numerous other childhood illnesses, making it difficult for doctors to determine the true cause of the symptoms.  To complicate matters even further, the symptoms may not show up at the same time (as in Isaiah's case) or many of the symptoms may not show up at all (incomplete KD).  Currently, there is no diagnostic test for Kawasaki disease.  It is typically diagnosed using a combination of clinical features, bloo...

It has been three years since Isaiah first had Kawasaki disease and I have told his story more times than I can remember.  His Kawasaki disease story has been told to friends, to family, to acquaintances and to people I have just met and it has been told in various forms: detailed, long version, short, clinical version and many variations in between.  As hard as I try to make the details clear, I think many people still do not fully understand Isaiah's condition.  In an effort to clear up any misconceptions, I have put together this list of FAQs to reveal the truth about Isaiah. Does Isaiah still have Kawasaki disease? No.  Kawasaki disease is a self-limited form of vasculitis.  According to Dr. Jane Burns, a KD specialist (as posted by the Kawasaki Disease Foundation ): "The inflammation and host immune response is intense but short-lived. Recovery from the acute illness is complete and symptoms and signs resolve completely."  Isaiah had Kawasaki disea...

This post is long overdue.  To be honest, I was not sure if I was ever going to write it.  I have avoided it until now, because I did not want to think about the anxious days leading up to Isaiah's bypass, the difficult days after his surgery or the excruciatingly painful day of the actual operation.  These were the darkest days of my life. In most of my posts I attempt to weave in a theme or drive home a main point, but this time I will not even attempt to do so.  I simply want to share part of my family's experience with you.  I am sure there will be many details that have been forgotten due to the chaos of those days and others that have been blocked out by my heart and mind.  Please forgive any errors I may make with regards to medical details or terminology.  Keeping all that straight can be a challenge even on the best of days. Friday, April 5th, 2013 - Devastating news Isaiah finally went in for his cardiac catheterization on the Frida...

Since Isaiah's Kawasaki disease journey began, there have been many things I have learned. One lesson that has become a reoccurring theme lately is when it comes to your health, or that of a loved one, there is no such thing as having too much information. Cardiac MRI Isaiah had a cardiac MRI done in mid March to further investigate his heart function.  Although he has an echocardiogram done every 3 months, it is my understanding that he will require a more complete diagnostic test at least once a year. Last year he had two cardiac catheterizations done, but our cardiologist decided on a cardiac MRI this year, as it would be able to give us an equally good understanding of the status of Isaiah's heart.  I was thrilled by this news, as the MRI is non-invasive, which would mean no incision to worry about and virtually no recovery time, except from the effects of the anesthetic. The results of the MRI confirmed what the cardiologists had suspected from last year's cardi...

Since Isaiah's was first hospitalized in October 2011, I have continually been amazed and grateful for all of the care and support we have received.  This support has come from close family and friends, but also acquaintances and many new "friends" I have made online whose children have also faced the challenges of having Kawasaki disease. Last summer I received an unexpected, but completely touching message from a friend of mine from university.  We had not seen each other in many years and were only in contact via the graces of Facebook, but his message was very heartwarming. Here is what it said: Hey Carin!  I hope you're having a good summer.  I wanted to run something by you. As you probably know, I recently signed up to do my first full Ironman next year at Lake Placid, NY. A lot of people ask me why I put myself through all the hours of training to complete these races and I often tell them that it's because I can when, for whatever reason, so many...

When I first began writing this post, Isaiah had not been diagnosed with his second case of Kawasaki disease.  However, given what we have gone through yet again, the original sentiments inspiring this post are even stronger.  It had been over six months since I had published anything prior to the post about Isaiah's unexpected second bout of KD.  Many milestones had passed, including Isaiah's first day of kindergarten, fourth birthday and the anniversaries of his KD hospitalization and discovery of his aneurysms.  It would be easy for me look back and reflect on how many of these moments were very bittersweet for me.  I could write about the struggles we have been through this past year and how this unexpected journey has challenged us in ways we never imagined.  However, in keeping with the New Year's tradition of resolutions and starting fresh (even though it is already the end of February), I prefer to focus on my "theme" for the year: gratitude. Gr...