730 Days

August 13, 2012 heart defect, Laine 8 Comments

“Stick ’em up, heart cath…”

Kevin joined our family in February 2010 with pulmonary hypertension, single ventricle, heterotaxy, VSD, and a few other heart anomalies.

Before we brought Kevin home, we knew there was a possibility that he would not be a candidate for a heart repair surgery. Just a few weeks after arriving home, it was confirmed that his pulmonary hypertension was indeed too severe to sustain a heart repair surgery. Thankfully his surgeons implanted a BT shunt to redirect blood flow from his lungs to try to decrease his lung pressures.

730 days ago, Kevin had a heart cath to see if the BT shunt had done its job.

Were his lung pressures low enough for surgery?

They were not.

But they were lower than before, praise God.

And so we were sent home to let Kevin live life and wait.

Not to live life as Kevin, a little 3 year old with a complicated heart, but as Kevin, a little 3 year old who loves to play hard and be silly and talk much and sing even more. (and maybe aggravate a few siblings just for good measure. 🙂

The past 730 days we have gone in for echo-cardiograms every six months to see if there are any significant changes.

There have not been any….until this past June. 🙂

Kevin’s oxygen had increased from lower 80s to the mid 80s. His heart looked good and strong on the echo.

And so our doctor thinks its time.

Time to check those lung pressure numbers.

So 730 days since his last heart cath, exactly TWO YEARS to the day,

Kevin will have another heart cath.

Will his lung pressures be low enough for surgery?

God knows.

It’s been a wonderful 730 days. I’m not gonna lie, when you don’t have a heart cath staring you in the face, it’s easy to slip into the land of denial, forgetting that we have a son with a serious heart condition.

Thankfully, we don’t face this alone. He is with us. He never leaves us. And ya know what? He loves Kevin more than we can imagine.

God’s will is always best. ALWAYS! So that’s why we’re praying for His will in Kevin’s life.

8 responses to “730 Days”

  1. Nikki says:

    Praying for that precious little male version of Abby 🙂 I can’t wait to see what the cath will reveal. Praying for peace, comfort, strength, and an assurance of His presence.
    love you all!
    The Symaseks

  2. Stefanie says:

    Oh my, Laine! My heart skipped a beat reading that Kevin will be having another heart cath soon… praying that the news is WONDERFUL, but above all trusting the ONE who made sweet Kevin!
    It’s so awesome to see your precious boy living and loving to the fullest 🙂

  3. Kimberley says:

    The Byrd’s are praying praying praying for your precious miracle…Kevin. Praying for a miracle my sweet friend and thankfully……our beloved Savior is in the miracle business:) I love you!!!!!

  4. Kim says:

    Go Kevin!!!!!!

    Really this is great. Our little Josie just came home in December. She has a complex heart (CHD) and is currently inoperable due to PH. I would love to know what hospital you are working with and if I can follow your blog as well.

  5. Laine Ferrill says:

    little update on Kevin’s heart cath: Hope this might help someone else!

    The cath showed that Kevin’s lung pressures have not changed much in the last two years. He is still not a candidate for the Glenn/Fontan procedure to repair his heart.

    BUT…the GREAT news is that it is obvious that his lungs are being protected from further damage! The shunt is doing its job indeed. I can’t help but think back to that day Dr. R called to tell us the doctors wanted to try a BT shunt to lower his lung pressures. He had said, “There is hope.” That was two years ago. And after Kevin’s shunt surgery, his pressures DID lower, just not enough for him to sustain the Glenn/Fontan.

    But they’re still lower, praise God! Last night the doctor told me he had just done a cath for a 30 year old lady who had single ventricle heart, and had a BT shunt put in when she was younger because her lung pressures were too high for surgery. She is THIRTY now! Her lung pressures never lowered enough for surgery, but her BT shunt has protected her lungs from further damage. That is so encouraging for me to hear!

    Kevin will eventually outgrow his shunt and will have to get new ones periodically as he grows. There’s no way to predict when that might happen…we will know its time when his O2 sats drop lower on a consistent basis.

    • hey Laine ~ i woke up today with you and your precious family on my heart. i pray you are all doing well. i have been out of touch since February when we brought ruthie home~ cannot say I have caught up, but i miss my friends :). I would love to hear about how you are all doing. I must have changed some things on my blog because when i log into google, i no longer have access to your blog. I think my blog is linked to ashperkins6@gmail.com. Much love and blessings!!! ashley

  6. Leslie says:

    Praying for GOOD PRESSURES!!! God IS ABLE!!!

  7. Leslie says:

    OK, somehow missed your last comment? Not sure, but it is showing now. I am sorry the pressures are still not allowing him to have the surgery, but I wanted to say that our Dr. said the same thing: people can live for many years with just the shunt. He spoke of how vital it was that our baby girl had this done when she did b/c it served to protect her lungs from further damage. So thankful Kevin was able to get the shunt when he did, and who knows what God will do. As you say, live life to the fullest in-between those cath dates. I am praying still for Kevin!!!

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