Playing Chicken

J had another 6 month cardiology check up yesterday.  You may recall that he was born with a pretty significant heart defect that was partially mitigated via open heart surgery when he was 4 months old.  Since the surgery, he’s had a perfectly normal childhood.  No medications, no restrictions.  You wouldn’t even know he had an issue if you didn’t see the neck to sterum zipper scar.  The only thing we do is go back for cardiological checkups every 6 months.  Every time we’ve had one of these checkups, the results have been “No change. Come back in 6 months.”

We didn’t quite get the same message yesterday.

Now, since J’s surgery removed his pulmonary valve, we knew that eventually he would have to have an artificial valve.  But the plan was to wait as long as possible so that he could grow as large as possible.  This is because artificial valves don’t grow with the rest of the heart, meaning repeat surgeries are needed to put in larger and larger valves.  The longer we go, the fewer surgeries he needs.

Unfortunately, not having a pulmonary valve also causes problems with the valve that is upstream in the heart’s blood flow, the tricuspid valve.  Because there is no other valve to stop the blood flow from pushing backwards against the tricuspid valve, J’s tricuspid valve leaks (called tricuspid regurgitation, aka TR) a little.  This leaking, combined with the lack of a pulmonary valve, causes J’s heart to work a little harder than it should.  If the TR becomes too great, his heart will become too inefficient, causing it to expand in an attempt to make up for the inefficiency.  This expansion can cause the heart to become arrhythmic, meaning it beats irregularly.  This arrhythmia also decreases the heart’s efficiency, making it grow larger, and … well … rinse and repeat.  So, it’s important to catch and correct this TR before it becomes too much of a problem.

The good news is J still has absolutely no symptoms of heart issues.  He’s never been short of breath, or had his lips turn bluish, or needed any medications.  Yesterday, his blood oxygenation level was 97, which is perfectly normal.  But when the cardiologist looked at the results of the ultrasound he had yesterday, she said his TR had increased ever so slightly (her words were that it went from “mild” to “mild/medium.”)  So she told us she wants to consult with some other cardiologists and cardiac surgeons to get their opinions on timing.

She doesn’t want to do anything too soon because of the need for multiple surgeries as he grows.

She doesn’t want to wait too long, lest his TR becomes so bad that it causes other issues.

But she also doesn’t want to do anything too soon since there are so many advances in cardiac surgery, that waiting just a little bit could mean new procedures become available.

After she told us this, I said “So, essentially we’re playing chicken between too soon and too late.”  She replied, “Yup, that pretty much sums up my entire job.”

So, right now, we’re waiting a couple of weeks to hear about her consultation with other cardiology specialists.  Based on that, we could do nothing and come back in 6 months.  Or we could start looking at surgical options.

Stay tuned.

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6 Comments on “Playing Chicken”

  1. miss V. Says:

    We are tuned in. Praying for J and his Doctors, that they will be guided to what ever is best for him and his sweet heart. It goes without saying that you ALL are in our prayers..Will continue until told to do otherwise. We Love you.

  2. quotation marks Says:

    1st grade…..and then the doctor’s visit… Boy, the ups and the not- so-ups. (and I’m not advertising for a parcel delivery service.) All of this sounds all too familiar (1988), but as you say, it’s a game of chicken as the state of the art, I imagine, progresses every day. I assure you I will continue to pray for ALL of you, for the next two weeks….and beyond. May God continue to bless all of you.
    Now how do spell/pronounce the name of that dino??? I’ll ask J.

  3. Carpool Queen Says:

    I’m so sorry the news wasn’t great.

    We love y’all.

  4. Aunt K Says:

    We know you would have wished to hear this report many years from now, but we know that our Lord will sustain you regardless of the results of the consultation. We also know that you’ll both demonstrate the grace you have in the past when the going gets tough. We love you and our five will be on our knees for your family!

    Love, Uncle S & Aunt K

  5. Doris Moreland Says:

    Oh, what limbo you are in! I hate that for you as parents…to have to wait “and see”. I wish you didn’t have to go through this…but you are…we love you and will pray for wisdom from all doctors involved!!! Love to you all!

  6. whimzie Says:

    First, you are a great explainer of cardiac things! I wish I’d known you when I was doing my cardiology rotation in nursing school.

    Second, I’m sorry it wasn’t a cut-and-dry, come back in 6 months appointment. I will pray that God will give all of you wisdom and a perfect sense of His timing.

    And I’ll stay tuned.

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