Isaiah's Kawasaki Disease Journey

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...

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon. I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week. Symptoms Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab ...

I have been asked to spread the word about a Kawasaki disease symposium that is happening in the Bay area.  It is being organized by the  Kawasaki Disease Foundation , a US non-profit organization dedicated to Kawasaki disease issues.  The event will be hosted by KD specialists from Seattle,  WA.  This is a wonderful opportunity to have your questions answered by two of the leading physicians in the field and meet other parents who have been affected by Kawasaki disease. Following is the basic info: When: Saturday, August 25, 2012 from 1-4 P.M. Where: Good Samaritan Hospital Auditorium 2425 Samaritan Drive San Jose, CA 95124 (408) 559-2011 What:  Join KD specialist, Sadeep Shrestha: Assistant Professor, Department of Epidemiology, School of Public Health, University of Alabama-Birmingham, Birmingham, AL, who will be talking about the Genetics of Kawasaki Disease. And Dr Michael Portman: Professor, Attending Cardiologist and Director of Ca...

It's been quite awhile since my last post.  There seemed to be nothing new to report regarding Isaiah's health, or perhaps I was just avoiding composing a post, as it would force me to think about Isaiah's heart problems.  In between check ups I find myself almost forgetting how serious his medical problems are.  We have fallen into so much of a routine of administering his shots and his oral medications, that they no longer serve as strong reminders of his situation.  However, as the date for his echocardiogram check up came closer and closer, I found myself thinking about Isaiah's aneurysms more and more and my anxiety level steadily increased.  A few days before his echo, I was watching a KD-related video online and ended up in tears.  The little boy in the video had suffered from KD, but despite a large delay in receiving treatment, he was fortunate enough not to end up with any long term effects.  Photos of the boy brought me back to the awful day...

Isaiah had his one month post angiogram  follow-up echocaridogram this past Friday.  I was more nervous than usual.  In the past, I had arrived at each appointment with an optimistic attitude and unexplained confidence that everything would be fine.  This time the optimism was dulled and the confidence was not so high.  Perhaps the experience of repeatedly receiving bad news was finally taking its toll on my positive disposition.  Or perhaps I was learning to manage my expectations, so as not to be disappointed and to prepare myself for the worst. Longest 90 minutes ever As fate would have it, the echo clinic was running a behind that day and Isaiah did not get called until half an hour after his scheduled time.  My nervousness was growing as opposed to subsiding.  Once the technician began doing the echo I watched the screen intensely for any clues as to Isaiah's status.  It was then that I realized that I really should look into how to...

It started as a routine check-up I took Isaiah for an echocardigram on Thursday as part of his routine three month check-up. When the technician brought in a cardiologist to take a look I knew something was wrong. Neither the technician nor the cardiologist asked us to stay, so we proceeded to get Isaiah's blood work done and I thought perhaps my paranoia was getting the better of me.  However, when we arrived at the phlebotomy clinic I found Isaiah's cardiologist in the hallway looking for us.  When a very busy and very prominent cardiologist takes the time to seek you out personally, the news can't be good.  My heart sank and I braced myself for what he had to say. It turns out that Isaiah's echocardiogram revealed that there was a problem with his heart function.  All previous echos had shown that his heart function was normal, but this one, in conjunction with the ECG, indicated that his left ventricle was not contracting as strongly as it should be.  Th...