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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.


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