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Thread: Our Grandson/heterotaxy syndrome - Goodbye Pierce

  1. #1
    Join Date
    Nov 2006
    Constantine, MI

    Our Grandson/heterotaxy syndrome - Goodbye Pierce

    I've been holding off posting about this for some time. However, the situation has changed somewhat recently and I thought I might bring my friends here up to date. Not wanting to step on the toes of any members, I simply ask those of you that are so inclined to keep him, Pierce, in your thoughts over the next few days. Pierce was born 2 months early with a condition called heterotaxy syndrome. Among other things, children born with this condition can have organs that are not formed properly or in the wrong place. Pierce was born without a spleen, a detached colon, and two right atria (the upper chambers of the heart). There is also an artery or two out of place. He has spent the majority of his short (4 months) life in the NICU at Riley Hospital for Children in Indianapolis. In his first two weeks he underwent surgeries to remove 80% of his colon and to place a band around an artery to help control blood flow. Two weeks ago he had a stroke, and although they have been able to get his seizures under control, he has not shown any improvement since then and he has been on a ventilator for the last 10 days. The plan had been to wait till he was a bit healthier and heavier (14 lbs) before performing the open heart surgery needed to correct his heart condition. Right now,because of the plumbing mix ups, his heart must pump twice as much blood to attain the same level of circulation as a healthy child of the same size/age. Unfortunately, that surgery must now take place regardless. They just do not see any improvement for him and waiting will be more risky that proceeding with the surgery. Jan flew out to be with her daughter last week and will remain there (staying at the Ronald McDonald House) till a few days after the surgery. The surgery is scheduled for 12/14. That brings you up to date. I'll post more as news comes in.
    Last edited by Rennie Heuer; 08-08-2012 at 05:09 PM.
    “We all die. The goal isn't to live forever; the goal is to create something that will.” - Chuck Palahniuk

  2. #2
    Join Date
    Jun 2010
    Vancouver Island, Courtenay/Comox Valley, British Columbia
    So sorry to hear of your family's grief. I send good wishes and good vibes...
    AKA Young Grasshopper Woodworker
    AKA The Rookie

  3. #3
    Join Date
    Aug 2007
    Reno NV
    So sorry to hear about this Rennie.
    Programmer - An organism that turns coffee into software.
    If all your friends are exactly like you, What an un-interesting life it must be.
    "A door is what a dog is perpetually on the wrong side of" Ogden Nash

  4. #4
    Join Date
    Dec 2007
    Los Angeles, CA
    After hearing about the enormous health challenges that the little guy is facing, all my problems seem minute. I wish the very best for your grandson and the whole family. Hope he fully recovers quickly.
    Chinese Proverb: Man who eats many prunes gets good run for the money.

  5. #5
    Join Date
    Jul 2009
    Amherst, New Hampshire
    So sorry to hear about the little guys troubles. Pierce will be in my families thoughts and prayers throughout your family's ordeal.
    Faith, Hope & Charity

  6. #6
    Join Date
    Dec 2008
    falcon heights, minnesota
    our best wishes, and hoping for the best rennie.
    benedictione omnes bene

  7. #7
    Join Date
    May 2007
    Thomasville, GA
    Sorry to hear about Pierce's problems. He and his doctors are in our thoughts and prayers.
    Bill Arnold
    Citizen of Texas residing in Georgia.
    NRA Life Member
    Member of Mensa
    Live every day like it's your last, but don't forget to stop and smell the roses.

  8. #8
    Join Date
    Dec 2006
    Independence, Kentucky
    Rennie,Pierce will be in my families thoughts and prayers. It is so hard to hear of children being seriously ill.

  9. #9
    Join Date
    Feb 2007
    North West Indiana
    Pierce is in the best of hands in my opinion. Our grandson goes there due to his seizures. They do work miracles there. I am so sorry to hear of all the suffering and troubles. If I get the frame on my truck straightened and fixed I will try to get down there and take them out to eat. Am waiting on some parts at this time so am at the mercy of a couple of suppliers. You got it though in the prayer department.
    God and family, the rest is icing on the cake.

    I'm so far behind, I think I'm in first place.

    Premier Bovine Scatologist


  10. #10
    Join Date
    Feb 2007
    Sorry to hear about that Rennie, our thougths are with Pierce and all his family.
    Best regards,

    __________________________________________________ __________________________________________________ _________________
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    I also dream of a shop with north light where my hands can be busy, my soul rest and my mind wander...

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