Skip to main content

Posts

Showing posts from January, 2012

A bit about bravery

"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 with the flow as much as he …

Kawasaki Disease Awareness Day

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 that die of heart problems playing hockey or baske…

Heart disease at 3 years old

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 not sure if any of these would …

Recovery and follow-up

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!


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 Isaiah had been through we wanted to ensure that he did not pick any viruses.  Even though we were told…

Treatment and hospitalization

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 important to note while we were alarmed to…

Our experience in the ER

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 help fi…

So what is Kawasaki disease?

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 is e…

How it all started

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 appetite.  We have been feeding…