Isaiah's Kawasaki Disease Journey

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...

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 ...

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...

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...