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Learning to expect the unexpected

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.  The aneurysms which are visible in the echocardiogram did not show any apparent clots, so the doctor suspected that there was a clot or narrowing in one of the arteries not visible on the echo, which was causing a decrease in blood supply to the heart.  In order to determine the cause of this change in Isaiah's heart function another cardio cathetertization and angiogram would need to be performed. We had just had one in January and he was not due for another one until next year.

Isaiah and I stayed at the hospital overnight on Sunday.  The last time he had the procedure done he was an outpatient and in preparation for the procedure we did not give him his enoxaparin shot in the morning. However, given his current condition, the doctors did not want to have him off of his blood thinners for such a long period of time.  Therefore, he was admitted on Sunday afternoon and administered heparin via an IV overnight until a couple of hours prior to the cardio cath.  Staying in the hospital overnight brought back the memories of Isaiah's first stay during his battle with the Kawasaki disease.  It was utterly depressing, except for the fact that Isaiah was so much healthier and in much better spirits than the first time around.  I just prayed that the results of the angiogram would not result in many more nights spent in the hospital.

The solider marches on

Isaiah was as brave as ever.  The IV technician was in awe of his calm and relaxed demeanor.  She praised him and told us that this is "not normal" for kids his age and remarked to the other nurses that he did not even flinch.  They came by to take blood from him at midnight.  He popped up for a few seconds and then went back to sleep, barely even noticing that they were poking a needle into his hand.  I didn't know whether to laugh or cry.  Was he just so used to all the pokes that he did not even notice any more?  It is sad and comforting all at the same time.  When it was time for the cath, I brought him into the procedure room and lay him on the table.  He told me that the pillow was "so round and comfy," barely noticing the all the strange equipment and not being phased by the three masked strangers surrounding him.  This kid is something else.

The results

After the angiogram was completed, Isaiah's cardiologist came to speak to us.  He confirmed that a clot had developed in the most distal section of his right coronary artery.  The clot was causing a lack of blood being supplied to the left ventricle, resulting in reduced function.  The good news was that some collateral arteries had developed that are helping to compensate for the occlusion in the artery.  We are hopeful that collateral arteries will continue to grow and improve the blood flow to the heart tissue.  However, my current understanding is that due to the lack of blood supply, some of the heart tissue was permanently damaged.  I am unsure if there is any possibility of this tissue regenerating on its own, but most of my online research indicates that this is not likely.  In any case, Isaiah's cardiologist has assured us that his heart function is still good and his heart is strong enough to allow him to do all the things that he needs and wants to do.  At this point there is nothing further that needs to be done.  We will be going back for a follow-up echo in a month and then a complete clinic visit in three months.

Images from Isaiah's angiograms. Left - January 2012.  Right - April 2012.  Part of his right coronary artery is visible.  The thin line is the unaffected part of the artery.  The saccular area is one of the aneurysms. The dye does not show up in the most distal part of the artery in the right image, which indicates that there is no blood flowing there due to the occlusion (blood clot).

Expectations

When I took Isaiah in for his check-up I really did not expect to get any surprises.  I thought we would be in and out and that everything would be status quo.  Obviously, not the case.  When the angiogram was performed, I expected that the findings would require something major to be done: by-pass, clot-buster, other.  The unexpected development of the collateral arteries allowed us to avoid those extreme measures.  In fact, we are actually right back where we started before the check-up: same medications, same routine.  What I have learned from this is not to have too many expectations, good or bad.  Life with a child with heart disease, or even just life in general, will be full of unexpected twists and turns.  While we will never be able to predict exactly what will happen next, but we will deal with each challenge to the best of our ability, using all the resources at hand.  Most importantly, we will cherish each day together and appreciate all that life has to offer.





Comments

  1. Yes, expect to be unexpected with this disease. My Little Bit & your Isaiah appear to have very similar issues. The good news, rough patches like this will get easier to deal with.

    I'm a new follower and if you ever want to vent to someone who's been there, let me know.

    ReplyDelete
    Replies
    1. Thanks for the encouraging words. I will certainly keep your offer in mind.

      Delete
  2. Thank you for sharing your story. You're kids are very lucky to have you in their corner. ((Hugs))

    ReplyDelete
    Replies
    1. I hope that sharing Isaiah's story will help at least one other family out there.

      Our family has a wonderful support system that has allowed us to survive these last few months.

      Thanks for your support and kind words.

      Delete
  3. Hi Carin,
    It is so heart-aching reading your story with KD. My son got KD when he was just 3 months old in Jan. 2012. It was really painful watching him go through so much at such a young age. His recent Echo turns out to be ok, but I still need to give him the enoxaparin injection twice a day and ASA. Thanks for sharing your story with your blog. Maybe I might bump into you some day at sickkids with my next appointment with the Dr. in 3 months. Take care and God bless.

    ReplyDelete
    Replies
    1. I am so sorry to hear that your (very) little guy had to go through that, but happy to hear that the last echo was okay. Do you need to administer the enoxaparin as a precaution or does your son have aneurysms? In any case, I hope that your son stays healthy and that future test results continue to be good.

      If you see me in the waiting room, please say hello.

      Delete
  4. Thank you for sharing Isaiah's story. It is heartbreaking! Hugs! My daughter just diagnosed kawasaki disease at 2 months old with very severe coronary arteries aneurysm. She has to be on Lovenox and aspirin and other medications now. I know how you feel as a mother.

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