Update on Ben

The update on Ben

The growth in Ben’s heart has grown significantly. Six months ago the growth was small and looked like a finger sticking out under his aortic valve. Now the growth has encircled the heart wall under his aortic valve. It is dangerously close to the aortic valve. The growth is also attached to the mitral valve flap. The leak in Ben’s aortic valve has also increased.

Ben’s medical information is being presented this week to the surgeon. The surgeon has to decide whether or not he thinks that he can remove the growth and still save the aortic valve (therefore not requiring an aortic valve replacement right now).

If the surgeon thinks that the growth is attached to the aortic valve, he will put off doing surgery until the aortic valve needs to be replaced, which the doctor thinks will be in the next year because of the aggressive growth of the membrane. If they try to remove the membrane while it is attached to the aortic valve, the valve is so fragile that it will most likely be damaged during any surgery and will require an immediate replacement. There is a life-span on replaced aortic valves and it would mean that Ben would face a future of further surgery.

If the surgeon thinks that the membrane has not completely grown into the aortic valve and he can remove the membrane without harming the valve, then Ben will probably have surgery within the next month.

Many people have ask what kind of growth this is. It is NOT cancer. There are some cells in his heart that have gone haywire and have started growing. They don’t know what causes it. They think that there is a genetic link, but don’t know which genes. Ben, Kath, and I have enrolled in a research study to try find a genetic link to this problem. One day in the future we may know the cause.

Other people have ask why they didn’t get it all the first time. The doctors told us at the time of Ben’s initial surgery that there was a 15% chance that Ben’s growth could come back. Ben was in a slightly higher category because he was so young (2 years old) when he had his surgery to remove the membrane. The doctor can’t tell which cells are going haywire. They can only make an educated guess as to which ones are bad. Because the membrane’s location near the nerves that tell your heart to pump the doctors can’t be too aggressive.

The doctors were always clear with us that we would have to closely watch for re-growth of Ben’s membrane until Ben stopped growing. After that Ben would have to monitor the leak in his aortic valve. So a lifetime of a cardiologist’s care was always in his future.

Ben does not show any outward signs of his problem yet. His cardiologist is asking us to restrict the time he spends outside in the heat. He allowed outside only if he is in the pool! He will like that rule. We do not expect an answer about his surgery until the middle of August. This is not a black and white choice and the surgeon will want to spend some time thinking about it.

Our prayer right now is that Ben’s growth has not attached itself to the aortic valve and that his aortic valve can be saved.

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About pastorlake

I am a pastor and self proclaimed Lutheran Geek. I serve Tree of Life Lutheran Church.

Posted on July 28, 2009, in 293. Bookmark the permalink. 16 Comments.

  1. Kelli Bushacker

    We pray for a safe recovery for you Ben. Our heart goes out to you guys. If you need anything please let us know.

    Peter, Kelli, Lexie & Paxie Bushacker

  2. Message has been delivered to TOL and I am sure your blog will be busy soon. Peace, love and hugs to all of you. Jan and Lawrence

  3. All the Lakes and puddles are in my prayers.

  4. Chris and Kath,
    Please know that our thoughts and prayers are with you and Ben in the up coming weeks and months. John

  5. Richard Ramirez

    Hermano my love and thoughts are with you and you’re family. I know that with Gods help your family will get thorugh this,everythings gonna be alright!
    Chi-town Rich

  6. Thanks Rich and to everyone for for your kind words.

  7. Mary Alice and Dolph Klein

    Our thoughts and prayers are with you and all of your families…David just emailed me today about Ben and enclosed your link…ma

  8. We are indeed praying for Ben and for his family too! May His Presence surround you in every moment and give you reassurance and rest, day by day. Love and peace, Susie and Jim

  9. Dear Pastor Chris and Kath’

    Please know that my prayers and thoughts are with you both and Ben. I know the Lord has a plan for all this and we need to trust in him.

    Mary

  10. Maxine McConnell

    Know that Dennis and I will include your family and Ben especially in our daily prayers.

  11. Life is a mystery tour of faith and relationships that bind us together in God’s grace. I consider your family, my family and extend many prayers and hope. TOL and all its members are prayfully united in peace, hope, and grace for all of you.

  12. Shirley and Larry Finke

    Larry and I hold the entire Lake Family up in prayer as Jesus wraps you in his tender arms of comfort and mercy. He will hold and keep you all safe in his grace. How blessed we are to have you as part of the TOL family.

  13. Oh my goodness, all the Lakes and puddles are in our prayers. Ben is such a special little boy, our hearts go out to you.

  14. Chris & Kath, We are thinking about you and keeping you all in prayer. Thanks for the clear explanation of what’s going on. God’s love and peace to you.

  15. Thank you for letting us know about Ben and his problem…we have been wondering how he was getting along. I hope you don’t mind if I put him on an Internet prayer chain that a friend of mine has..he will have a LOT of people praying for him.

    Lois and Verlyn

  16. Thank you Lois.

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