Monday, April 6, 2015

Surgery Update

I have tried over the course of the last several weeks to update the blog and every time I would log on no words would come. Still today as I sit with tears rolling down my cheeks and a pile of tissues by my side the words are just not there to adequately explain the reality that we are faced with.

For the past 4 years we have watched Jackson from both inside the womb and the outside world battle with the destruction of heart disease. His body has done remarkably well considering the backwards structure and unlikely combination of his disease called LTGA.

Unfortunately his heart is under distress now and in the beginning stages of failing. Please forgive me as the next part of this update is so choppy. I can not for the life of me type anything eloquently about what we are about to experience.  After Jacksons MRI images showed his left ventricle dilated and his tricuspid valve with more regurgitation our surgeon has put together the following plan for Jackson:

1)  May 28th, 2015- 1st Heart Surgery- PA Band & Pacemaker (Hospital Stay 1 week & Recovery 6 weeks)

We will place a band on his pulmonary artery to begin to train (condition) his left ventricle in hopes to at one point be able to switch his heart back to the correct position. Along with the band he will be getting a dual chamber pacemaker that he will have for life. The battery pack will be inserted into his abdomen. He will have two incisions. One for his open heart surgery and one for the abdominal positioning of the pacemaker battery. The battery life is around 8-10 years and then will need to replaced or when needed for the rest of his life.

2) PA Band tightening

Our hope is that the original banding surgery will be successful and that no tightening of the band will be needed. However, because this is all very tricky to guess how he will handle the change of pressure, etc, our surgeon is thinking that we may need to go back in after about 6 months or so later and adjust the band to tighten it to condition the ventricle even more. This again is another open heart surgery.

3) 3rd Surgery- The Double Switch (Avg 2 week hospital stay- Tough recovery)

The goal is to have this done anywhere from a year to 18 months after his first surgery. This is the surgery that will actually "flip" his heart and correct some issues with it. It is extremely risky and not a guarantee that his heart will do well. We will explain more about this surgery as time goes on.

Over the course of the next 12-18 months our precious son will endure more than anyone should in a lifetime. The risks are stacked high, but this is our option right now. With the shape his heart is in if we leave it alone, it will fail. It is time to do something so that we can give him the shot he so desperately deserves.

As Chris and I spend every late night scouring over the details of how to make all of this work we believe that God knows exactly what we need. He will provide. I can tell you that we are standing in front of what seems like an impossible mountain. There aren't the finances, the strength, the wisdom, nor the ability to make it up. We stand confident that this is going to be ALL God and we trust that as He has shown his faithfulness through every twist in Jacksons story He will continue to every step of  this next hike upward.

Please stand with us and pray for our little boy. We are going ALL in to fight for him. Chris and I are throwing everything we have at this and we need your support to help hold us up. We need a miracle! In the coming weeks we will be updating the blog with different fundraising ideas we have and updates on Jacksons story leading up to surgery day. Our life just took a turn for the crazy, but we serve a crazy good God that always shows up in the craziest of ways on our behalf!

Jackson, you are loved beyond words. The torture that this decision has been is never something that words can describe. To willingly let anyone hurt you goes against everything in me as your mom, but I want you to see the world buddy. To live and experience all that God has created you to be. To one day testify of the struggles and valleys that He has carried you through. This is just one season among many in your life. The best is yet to come my boy! Love you to the moon and back, forever and always!!





8 comments:

  1. I am filled with tears reading this. ..I can feel the cry of your heart Kathryn. We will be praying for Jackson! Love you friend.

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  2. I was just thinking of your family a few days ago, wondering about your precious boy. My heart aches for all that you have before you, but I stand in faith with your family and attest to God's goodness and faithfulness. I will be praying for you and for Jackson and your family. His hand is on each of you.

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  3. I pray. I pray. I pray. May God wrap you all in his loving arms and carry Jackson through this pain, and may He lift you all up in His grace.

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  4. i don't know what to say to encourage you, my heart breaks for you all. i am praying for a miracle and pray that all things will come together as they need to. you're an amazing woman of God and an incredible mommy! i will pray fervently for all of you.

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  5. You are such an inspiration to us all with your beautiful words.....your strong faith.....your beautiful family....we pray for your whole family and precious son Jackson.

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  6. Allison MassengaleApril 7, 2015 at 4:38 PM

    I wish I could see you in person and give you a hug, but just know that we are praying with and for you guys!! Thank you for sharing your heart - you are not alone, and I trust that God will be with you guys each step on this journey.

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  7. I want you to know that the entire branch of Randy's family is praying for you all. The strength that you and Chris have already and that you will need in the future cannot be measured; but you will find it. We will all keep you in our prayers.
    With love, Tiffany (Randy's youngest sister)

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  8. As I read this I knew that needed to comment. Oh how I wish that I had words to express what is flooding my heart for you, your precious boy, and your family. Mostly what comes to mind are verses. So I will share them. And I will pray for you all like a crazy woman!

    You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. Psalms‬ ‭139‬:‭13-14‬

    For I hold you by your right hand— I, the LORD your God. And I say to you, Don’t be afraid. I am here to help you. Isaiah‬ ‭41‬:‭13‬

    Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need. Hebrews 4:16

    My health may fail, and my spirit may grow weak, but God remains the strength of my heart. He is mine forever. Psalms‬ ‭73‬:‭26‬

    “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him." John‬ ‭9‬:‭3‬

    My flesh and my heart may fail,
    BUT GOD is the strength of my heart and my portion forever. Psalm 73:26

    Let all that I am praise the LORD. With my whole heart, I will praise His holy name. Let all that I am praise the LORD. May I never forget the good things He does for me. He forgives all my sins and heals all my diseases. He redeems me from death and crowns me with love and tender mercies. He fills my life with good things. My youth is renewed like the eagle’s! Psalms‬ ‭103‬:‭1-5‬









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