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...

"Bravery: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty." From the beginning of this ordeal up to now, I have been amazed by the bravery shown by my family.   The big brother I focused my first few blog entries on Isaiah's medical condition in order to raise awareness of KD and made little mention of his big brother, Noah.  Although, Isaiah was the one suffering from this disease, Noah's life was greatly affected.  When Isaiah was in the hospital Noah was often left with uncles and grandparents.  Mike and I would take turns at the hospital, so he was only ever with one parent at a time.  Noah is a child of habit and thrives off of routine.  Needless to say his routine was completely disrupted.  I was amazed by how well he coped with all of this change.  I am sure that he missed our family being altogether, because Mike and I certainly did, but he didn't fuss and he didn't complain.  He went wi...

Today is Kawasaki Disease Awareness Day. Many of you may be visiting this blog because of an email I sent out or a post on Facebook.  My main goal right now is to spread awareness about this disease. Please take the time to read my previous post:  So what is Kawasaki disease  or visit   The Kawasaki Disease Foundation website  directly to learn more about this disease. You will often read that this disease is rare and affects mostly boys under 5 that are of Asian descent.  However, after Isaiah was diagnosed with Kawasaki disease (KD) I spoke to many people that knew of other children that had KD and most of those children did not fit into the typical category.  I had never heard of KD prior to Isaiah's diagnosis and because it is not a common illness it may often go misdiagnosed.  The disease can resolve itself, but without treatment the chances of coronary complications increases.  Maybe those otherwise healthy kids you hear about tha...

Shock, anger, sadness When we received the news about Isaiah's coronary artery aneurysms we were in shock and disbelief.  It was so surreal and I felt like it wasn't really happening.  I sat there numbly and listened to the nurse explain that we needed to start giving Isaiah blood thinner by injection twice a day.  Even after they went through all of the information with us I still felt like it wasn't happening and that I wouldn't REALLY have to inject my little guy twice a day, would I? In addition to our shock, there was also a lot of anger and sadness.  We were always told that because Isaiah was treated within 10 days of the onset of the fever that his chances of developing the aneurysms were less.  The questions swirled in our heads.  What if the hospital had been more timely in administering each round of treatment?  What if they had done another echo before he was discharged?  What if they had done a follow-up echo sooner?  We are n...

We were happy to have Isaiah home.  We were happy that he was finally getting better.  We were happy that we didn't need to make the trek down to SickKids.  We were happy that all four of us could eat breakfast together again. Recovery for Isaiah was not easy.  He had lost a lot of weight during his illness and had not been walking around for almost two weeks.  He was hesitant about walking again and he was experiencing pain in his joints.  I remember the first time I got him to walk unassisted.  I was so happy and proud.  It felt like he was learning to walk all over again at 3 years old! Happy 3rd Birthday, Isaiah! Isaiah with his big brother, Noah. We had a quiet birthday celebration for Isaiah with just the four of us.  I got him the Diego balloons and cake that I had promised him long ago.  Poor guy was so tired that he opted to go to bed at 6:30 pm instead of eating his birthday cake. Isolation After all that Isa...

Isaiah spent a total of 12 days in the hospital.  His time there was a complete roller coaster ride of ups and downs, and most of it has all blurred together in my memory. IVIG On the evening of October 20th, Isaiah finally received the IVIG, which is administered via IV (as the name implies).  We were told that if Isaiah remained fever-free for 24 hours after the drip finished, then the treatment was successful. The fever went away slowly and Isaiah showed some improvement in appetite and energy-level.  I was sure that we were out of the woods, but at hour 22 the fever returned.  We felt horrible and started wondering if something else was going on.   However, the blood work showed evidence of Kawasaki disease and the echocardigram that had been done on Isaiah that day also showed mild coronary artery dilation, which is common with KD.  The problem with KD is that there is no definitive test that can be done to confirm the diagnosis.  (It is impo...

After we received the diagnosis from the doctor, she explained that a treatment would be administered via an IV. At the time everything seemed very simple and the risks minimal. Little did I know what lay ahead. Diagnosis  There was a shift change and another ER doctor came to see us. She examined Isaiah again and we had to repeat the order of events all over again. As with the first doctor, she also brought in her senior to take a look at Isaiah. They took some time pointing out various symptoms to each other. They proceeded to tell us that Isaiah's symptoms were not "textbook.". He was missing some of the classic signs of Kawasaki's disease, including the red hands/feet and red whites of his eyes (conjunctivitis).  It was possible that he was an atypical Kawasaki case or that his illness was due to some sort of bacterial infection. They decided to start him on antibiotics in the event that it was in fact an infection. Blood work would need to be completed to hel...

Before I go any further with Isaiah's story, I should explain exactly what Kawasaki disease is.  Here is a blurb that I copied from the Kawasaki Disease Foundation's site Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon. KD is more common in boys than girls, and the majority of cases are diagnosed in the winter and early spring. It is not contagious. The disease is named after Tomisaku Kawasaki, a Japanese pediatrician who first described the illness in the medical literature in 1967. Although it is more prevalent among children of Asian and Pacific Island descent, KD affects people of all racial and ethnic groups. It i...

Here goes my first post.  I suppose it makes sense to start at the beginning and give a sense of the order of events leading up to Isaiah's diagnosis. October 12, 2011 Seven days into Isaiah's preschool career he comes down with a fever.  I assumed that it was just a virus that he caught at school, as everyone knows that daycares/preschools are a basically germ-filled petri dishes.  I give him Tylenol to try to keep the fever down. October 13, 2011 Isaiah continues to have a fever (between 38C and 39.5C), so more Tylenol is given.  He then has two episodes of diarrhea, so I decide to reduce the variety of foods he is eating.  My pediatrician always recommends that we take our kids off dairy when they have diarrhea, so don't allow Isaiah to have any milk. October 14, 2011 The fever returns as soon as the Tylenol wears off, so we continue administering the maximum dosage allowed per day.  Isaiah also continues to have diarrhea and not much of an app...