Skip to main content

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 have made a difference.  Isaiah's aneurysms may have developed while he was still febrile in the hospital during treatment or they may have developed in the subacute phase when he was recovering at home.  We will never know.

We felt like Isaiah had been cheated.  He was such a sweet, loving, innocent boy.  Why was he one of the 1% of kids that develop these aneurysms?  We were told that his aneurysms fall into the giant category.  While there is always a chance that they will improve, it is most likely that he will be taking some sort of blood thinner for the rest of his life.  That means no contact sports as it is too risky.  No hockey.  No baseball.  No football.  Even basketball or soccer are iffy.  This was so sad to me, as Isaiah had shown such a love and ability for sports at a young age.  Of course, in the grand scheme of things these are all trivial -- at least Isaiah is still here with us.  That's what matters.  The danger with coronary aneurysms is the possibility of developing blood clots or stenosis (narrowing of the artery as it heals).  Either of these can result in a heart attack.

More echos and an angiogram
Isaiah had another echo done a few days later and then a third four weeks later.  Both echos showed that the aneurysms are not getting any larger and that there are no blood clots.  Additionally, his heart function is good, so at least we know that it is working properly.  Good news.

A week ago Isaiah underwent a cardiac catheterization and angiogram.  The angiogram revealed more aneurysms that are not able to be viewed via an echo.  Although we knew this was a possibility, we had hoped that there would be no significant findings. Again, we were disappointed. Based on the discovery of the additional aneurysms and their location (some are more distal) our cardiologist decided to add three more medications to Isaiah's regime. Another anti-coagulant (Plavix), beta-blockers (metoprolol) to strengthen his heart and Crestor to potentially aid in healing of the aneurysms.  These are all in addition to the enoxaparin that he is already receiving via an injection twice a day and the aspirin he takes once a day.

We asked the doctor if this is the worst case he has seen.  He said that it was not the first time he was asked that, and while Isaiah is not the worst, he is definitely on the more severe end of the spectrum.

Comments

Popular posts from this blog

A Letter to Parents of Kawasaki Disease Heart Warriors

Dear Parent of a Kawasaki Disease Heart Warrior,

I know how you feel.  I know how scary this all is.

Maybe you have just received the news that your little (or maybe not so little) one has coronary aneurysms, because of Kawasaki disease.  What does that even mean!?  Is your child going to live with this condition for the rest of his life?  Is your child going to live to see his next birthday?

Panic may have set in, but hopefully you have calmed yourself enough to listen carefully as you receive the first set of many medical instructions that will follow.  You may be told that your child needs to start taking blood thinners right away, otherwise he may develop a clot in one of his aneurysms.  A clot in his heart?!  That can't be good.  Perhaps no one mentions the word "heart attack," but later on you may realize that this is actually what the doctor is saying without actually saying it.  Fast forward many years and your child's cardiologist may still continue to use…

Quick update: second bout of Kawasaki disease

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 for strep …

I lie every day -- and I'm not sorry

Back in April, YummyMummyClub.ca held a writing contest based on the theme, Truth or Lies: What I've Never Said Before.   This was my 600 word submission:

I lie to my son every day.  I teach my sons that lying is wrong, but I don’t tell them that sometimes we need to finesse the truth and be selective with the details we share.  I know it’s all the same, which makes me a hypocrite -- but I’m not sorry.

For the past four years, I have told my son that his heart is special.  So special that he needs to receive blood thinning injections twice daily, along with various other medications.  So special that he needs to visit SickKids monthly for blood tests and every three months, so the doctors can check his heart.  I don’t tell him that the coronary arteries that supply blood to his heart muscles have giant aneurysms, as a result of him having Kawasaki disease at the age of three.

Once a year, I tell Isaiah that he needs to go for his “special sleep” at the hospital.  He handles it like …