Our Grandson/heterotaxy syndrome - Goodbye Pierce

Rennie Heuer

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Constantine, MI
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.
 
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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.
 
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.
 
Pierce, those close to him and his medical team will be in my prayers and thoughts. Be assured that he is in a very good place with very good doctors. Riley is a wonderful place.
 
What horrible pain you must be in. I wish I had a magic button I could push and fix Pierce. I am so glad other FWW people are familiar with the hospital and have such good feelings about it and the doctors.

Pierce will be in my thoughts---positive thoughts, that is!!!

JimB
 
Rennie,

My best thoughts and prayers are with you and Pierce. All of us can handle the illnesses of our loved ones and friends. But the illness of a small baby who has not yet been able to enjoy the wonders of our world is sometimes almost too much to bear. May God touch Pierce and your family.
 
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