Isaiah's Kawasaki Disease Journey

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...

When I first started this blog I was not sure what type of response I would get or how far its reach would be.  I have been overwhelmed by the positive feedback I have received and encouraged by the number of people that have shared my blog with others.  I have had quite a few friends tell me that my blog had been passed onto them from other friends who had no idea that they knew my personally.  The power of the internet and social media is amazing.  (In relation to this, I have created a Twitter account for the blog to make it easier for people to follow the blog.  I will be sure to tweet about any new blog posts.  You can follow us at:  www.twitter.com/isaiahsjourney .) I was recently contacted by a friend of a friend whose cousin's son had been hospitalized with Kawasaki disease.  When I first heard about this little boy my heart ached.  It brought back memories of Isaiah's stay at SickKids and the moments of despair and helplessness we ...

I sometimes wonder if people imagine Isaiah as lying in a bed somewhere, looking very ill.  The truth is, he looks and acts like any healthy 3 year old.  Looking at him, you would never know that there is anything wrong with his health.  That is until you roll up his sleeves and see his arms or take a look at his thighs. The bruises left by his twice daily enoxaparin injections are the only visible signs of his condition.  There are times when I actually forget that Isaiah has any aneurysms, only to be reminded by the alarm going off, indicating that it's time for me to give him one of his many medications. I think one of the few blessings in all of this is that Isaiah is young enough that he has quickly adapted to this new way of life and will probably not remember what life was like before he had Kawasaki disease.  He knows each morning and each night, that he will receive his shot.  He has even begun to ask if it is the leg or the arm today.  He s...

I have written much about the trials we have gone through during Isaiah's illness and subsequent discovery of his aneurysms.  However, I would be remiss if I did not mention that we have definitely not gone through all of this alone.  From the the first day that Isaiah was hospitalized, up until today, I have been so touched by the number of people that have shown concern for my little guy.  It may sound completely cliché, but it is times like these that I am so grateful to be surrounded by such wonderful friends and family.  I mean that with all sincerity. Family During Isaiah's stay in the hospital our families were very supportive. Mike's family continuously offered their help.  My parents, uncle, brother and his wife not only helped to care for Noah, but also cared for Mike and I as well -- bringing us food to eat when we did our shifts at the hospital, running errands and just making sure we had what we needed to make it through those long days and night...