My Boy’s Heart

(A gentle giant, even as a toddler.)

I’ve already told you that our sweet A. is having surgery. That happens two days from now. TWO DAYS. Gracious.

 

Anyway, here’s how things have unfolded– the abbreviated version:

 

9/12: I get a call from the school. A. has lost consciousness. Lots of tests are done. We learn he has a heart block arrhythmia and the doctors are really concerned. Two days later, we learn he has Lyme Disease.

 

10/12: A. finishes four weeks of antibiotics to treat the Lyme. Everyone is optimistic that the arrhythmia will be completely gone. It is not.

 

11/12: A stress test reveals that A’s PR-interval is lengthening rather than shortening during physical exertion– a true anomaly.

 

12/3/12: A. nearly loses consciousness at school three times. The nurse calls me. I call the doctor. She tells me to take him to the ER. The ER transfers him, via ambulance, to a children’s hospital in our state’s capital. After 3 days in the children’s hospital, the team decides to give him stronger antibiotics in case the Lyme is still present.

 

12/18/12: A. completes the second round of medication. Our pediatric cardiologist still sees the arrhythmia. We now know it’s congenital and decide maybe the only course of action is to follow A. regularly. We agree to up his sodium levels to help bump up his naturally low BP. We plan to see the cardiologist in the summer.

 

1/10/13: The cardiologist calls me, out of the blue. He’s been losing sleep over A’s case, he tells me, and would like an electrophysiologist to look at him. He gives me a number. Ultimately, my husband contacts the head of pediatric cardiology at Yale and he tells us he agrees that A. should be evaluated.

 

1/31/13: We take A. to Yale-New Haven’s Children’s Hospital and meet with a cardiology team. In the end, the decision is made to place a long-term heart monitor to figure out what has cause the syncope (fainting.)

 

 

So there you go. On Friday, March 1st, we’ll head out bright and early to have this procedure done. It is outpatient surgery (provided all goes well) and involves placing a slim monitor under both the skin and muscle of his chest. By placing it under the muscle, it should be virtually undetectable from the surface once he’s all healed up.

 

The purpose of this monitor is to pick up what happens with his heart just before he faints. The doctors, and we, feel pretty strongly that A’s fainting has been a vaso-vagel response to his blood pressure and heart rate dropping. (This can be treated rather easily, and usually through diet alone.) If, however, the arrhythmia is causing it (and that IS possible), it would mean that there is, essentially, an electrical problem that might need to be corrected with a pacemaker. At this point, we do NOT think A. needs a pacemaker… but it’s important to basically “prove” that in order to ensure we’re protecting his heart as best we can.

 

My strong, healthy boy. I have so much faith that he’s going to do great. He’s so strong and obedient and determined; he’ll do whatever they ask of him, without complaint.

 

I would ask for your prayers if he should happen to cross your mind. Thanks so much for caring about our family– I can’t quite express what a surreal joy that is to me. :)

 

 

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30 comments to My Boy’s Heart

  • mlearley

    Your family came to me this morning as I was praying. You are surrounded by a wonderful community of people who care about you and your son. Please continue to trust in God and know that He has the best interest in mind for your son. HUGS my friend!

  • You and your family have been on my mind. Praying for all of you, as well as A’s doctors!

  • I will be praying for you this week!

  • Good luck! I hope this really does provide answers for A!

  • Jennie

    Jessica,

    Thank you so very much for sharing. God is good and I pray he will give you and A comfort during this scary and confusing time.

  • Sonja

    I will definitely be praying for you & your precious son! Hopefully the monitor will be all he needs, and the solution easily attainable. It is amazing what technology is available to help diagnose heart problems. I have to admit, I am very glad to live in this time period! My father has a very rare electrical heart condition called Brugada Syndrome. It is congenital, more common in males. I try not to live in constant fear that one of my sons will inherit it. My father has had an AICD since his first cardiac arrest in 1993.

    • Thank you, Sonja! I, too, am grateful for the technology we have. Realistically, A. should face a couple weeks of inconvenience and then no limitations with this monitor. We are fortunate that such options exist to help us properly diagnose and treat our precious little guy, no matter what we end up determining. Do they do anything special in screening for your father’s condition? Is there a certain age when it is typically detected? I’m sure that’s hard on your mama-heart to think about. :(

      • Sonja

        It can sometimes be picked up on an ekg. They are still researching to find out why it doesn’t always show up (you can have a normal ekg and still have problems later) We all have an ekg done every year that is sent to my father’s cardiologist to compare. My father had his first cardiac arrest at 40, but Brugada has been diagnosed in children as young as four.

  • Jamie

    I have been thinking about A for months and hoping you would update us on this part of your lives!

    Although it is not the post I was hoping for “he had Lyme disease and it affected his heart but thru antibiotics it is al cleared up now and his heart is perfect” us more what I was praying you’d say……

    BUT, it seems like you have a wonderful group of drs on your side. (Can I just say that I am a little jealous and happy for you that you always seem to have the best support team of drs, teachers, etc! I’ve NEVER felt that I have had a professional in my corner like that)

    A will be in my prayers! I hope they can find the cause and a pacemaker is not necessary, but if it is I know there are millions of people who go on with their lives normally because of them.

    Big hugs for the little guy!

    • Thank you, Jamie! Your hugs and prayers bring great comfort. We have been very fortunate to have some fantastic people in our lives to offer insight and support– I try to remain ever-grateful for that. I know not everyone is so lucky.

  • I’ll be praying! Praying for peace, strength, comfort, wisdom for the doctors and support.

  • I wish you the best of luck and will be praying for you.
    I’ve had some experience with the symptoms that your son is having, passing out, low sodium. My claim to fame is that I only passed out in doctor’s offices. After multiple tilt-table tests, it was finally diagnosed as Neuro Cardiogenic Syncope. Basically whenever I was overheated, especially when standing, I would start to feel faint. I’ve managed to control it for the past 20 years with diet and staying out of crowds.
    Good Luck.

    • Thanks so much for sharing your experience, Jennifer– that’s good to know. If we can rule out the arrhythmia’s involvement in the syncope, we should be able to do pretty well controlling it with diet. That is definitely our hope!

  • Sheesh! The kind things that can go wrong in the human body are mind-boggling! Positive thoughts and good wishes coming your way. His docs seem to be right on it, how fortuitous that they are accessible to your son!
    Hugs to you and all your family!

  • Becky

    So much for such a little guy. My thoughts are with A and your family. On the plus side, it sounds like you have the cream of the crop of doctors! Can’t get much more comforting than that. Best wishes. I’ll be thinking about you all.

  • Susan

    so glad you have an amazing team of doctors for your son. Best Wishes for the whole family.

  • Rhoda

    Sounds like God is already at work as the doctor calls you unable to sleep with A. on his mind. Wow! Blessings on you and your family.

  • I know I don’t often leave a comment, but please know I will definitely being saying a prayer for your son and your family. May everything go as smoothly as possible!

  • Linda

    Hi. I’m a total stranger (stranger than most, some say), serving as a missionary in Poland. I follow your blog from time to time, and I want you to know that I am praying for you, your son, and your whole family today. May you sense God’s peace and sovereignty through this situation.

  • [...] Those of you who have been around probably know the story from there. If you’re newer around here, WELCOME, and you can catch up pretty easily in this post. [...]

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