AysJ8
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AysJ8, October 24,  2018  9:37pm EST

CoA and congenital valve defect and ventricular patch outpouching

Hello,

I have an 8 year old that had life saving surgery at one week old with nearly interupted arch repair (on life support day 1)...her ventricular patch repair is pouching out and hitting her valve causing possible leakage issue...hence a prospective new surgery.  Only, now this has to be faced with a young child to explain all this to and to go through...any help or encouragement would be welcome in your wisdom.  She's had other medical issues/events so this is yet another event...very difficult now.

So grateful to be on this chat.

Thank you so much,

 

4 Replies
  • AHAASAKatie
    AHAASAKatie, October 25,  2018  8:41am EST

    Thank you so much for sharing what is happening in your daughter's world. My daughter has a joint connectivity disease and has undergone a few very invasive and painful procedures in order to help her. I know how hard these conversations are. She is a teenager now and  I remember we spent a good year or so talking about how she felt "broken" and why were things wrong with her when her friends were normal. A long time ago, her therapist told me to start the conversation about her condition in generalities and then keep answering with more details until she stops asking questions. That will be my cue that her brain and emotions have absorbed all she can take at that time. Please know that we are here for you both. Best Katie 

     

  • AmbassadorC
    AmbassadorC, October 26,  2018  6:06am EST

    Good Morning and welcome to the support network. We are so happy that you have found us and have shared this with the community. While going through heart surgery is never easy for anyone, it is especially challenging when it involves our children. I recently found that the hospital where I had my open heart surgery for my mitral valve repair has a specific department that assists cardiac patients and anxiety issues pre surgery.  Perhaps this might be a resource to research or inquire about to your daughter’s cardiac team.  Or, in the alternative if there is a specific children’s hospital in your area, that may be a resource to consider pre surgery. Above all, it is important to encourage her that she has a heart that will be stronger than ever and full of so much more to love and give to others.  

    Know that we are here for you both and will support you through this journey. ❤️🙏🏻

    With heart, 

    AmbassadorC

  • AmbassadorC
    AmbassadorC, October 26,  2018  8:00am EST

    Good morning again, On my way to the train, I was flipping through the stations and happened to catch this tune and thought of you and your concern for your daughter. I thought this song by D.Stevensen might be what your heart needs at this moment. ❤️

    In the eye of the storm
    You remain in control
    And in the middle of the war
    You guard my soul
    You alone are the anchor
    When my sails are torn
    Your love surrounds me 
    In the eye of the storm

    When the solid ground is falling out from underneath my feet
    Between the black skies, and my red eyes, I can barely see
    When I realize I've been sold out by my friends and my family
    I can feel the rain reminding me
    In the eye of the storm, You remain in control
    In the middle of the war, You guard my soul
    You alone are the anchor, when my sails are torn
    Your love surrounds me 
    In the eye of the storm

    Mmm, when my hopes and dreams are far from me
    And I'm runnin' out of faith
    I see the future I picture slowly fade away
    And when the tears of pain and heartache 
    Are pouring down my face
    I find my peace in Jesus' name

    In the eye of the storm (yeah, yeah)
    You remain in control (yes you do, Lord)
    In the middle of the war
    You guard my soul
    You alone are the anchor
    When my sails are torn
    Your love surrounds me (Your love surrounds me) 
    In the eye of the storm (in the eye of the storm)

    When the test comes in and the doctor says 
    I've only got a few months left
    It's like a bitter pill I'm swallowing
    I can barely take a breath
    And when addiction steals my baby girl
    And there's nothing I can do
    My only hope is to trust You
    I trust You, Lord

    In the eye of the storm (yeah, yeah)
    You remain in control
    In the middle of the war (middle of the war)
    You guard my soul (yeah!)
    You alone are the anchor
    When my sails are torn
    Your love surrounds me (yeah!)

    In the eye of the storm
    You remain in control (yes you do, Lord)
    In the middle of the war (in the middle of the war)
    You guard my soul
    You alone are the anchor
    When my sails are torn
    Your love surrounds me
    In the eye of the storm

    Oh, in the eye of
    Lord, in the eye of the storm
    I know You're watching me, yeah
    Ay

    When the storm is raging (when the storm is raging)
    And my hope is gone (and my hope is gone, Lord)
    When my flesh is failing
    You're still holding on, oh whoa
    When the storm is raging (the storm is raging)
    And my hope is gone (and all my hope is gone)
    When my flesh is failing (my flesh is failing)
    You're still holding on, ooh

    When the storm is raging (when the storm is raging)
    And my hope is gone (and my hope is gone)
    Even when my flesh is failing (flesh is failing)
    You're still holding on, holding on

    The Lord is my Shepherd
    I have all that I need
    He let's me rest in green meadows
    He leads me beside peaceful streams
    He renews my strength
    He guides me along right paths, bringing honor to His Name
    Even when I walk through the darkest valley, I will not be afraid
    For You are close beside me

    Keep on fighting with heart❣️

  • MedicMom
    MedicMom, December 10,  2018  11:42pm EST

    I wish I had advice for you, but unfortunately I don’t. My little boy had a CoA repair at about two months old, a few months ago. He also has an anomalous pulmonary vein (PAPVR) and another that is narrow. We hope that he won’t ever have to go through another surgery, but it’s possible that he will at some point. He has some other medical concerns as well and I feel for you. My husband and I are so thankful that the surgery that is behind us all shouldn’t be remembered when our son is older. I do know, though, that kids are resilient and they understand far more than we give them credit for. I have taken care of kids with chronic medical issues and have always been so surprised by their maturity, understanding and often wisdom beyond their years. 

    You, your daughter and your family will be in my thoughts and prayers. 

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