Bound by Grace: First Update

All is going well. Rebekah is stable with no problems. The surgeons are about to place the band around her left pulmonary artery now.

Nancy

Rebekah Grace

My name is Rebekah Grace, and I was diagnosed with DiGeorge Syndrome shortly after I was born on June 29, 2009. As a result of this genetic disorder, I have Truncus Arteriosus, which is a complex congenital heart defect (CHD). I had my first open heart surgery on July 7, 2009, and I had my complete repair on November 5, 2010. My surgeon was unable to create a right pulmonary artery, so I only have one working lung. Because of this, my heart repair created high pressures in my heart, and I am on several medications and oxygen to help reduce the pressures. I am currently waiting for the doctors to come to a decision about what the next best step is in my care plan.

My Daddy and Mommy named me Rebekah Grace, which means Bound by Grace. God's grace has been very evident in my life, even before I was born. There are lots of people praying for me, so please come back often to see how God uses my life!

If you would like to contact my Daddy and/or Mommy, please click here. They would love to talk to you!

The Medical Highlights

Heart Catheterization at MUSC April 15, 2015; discharged same day!
Heart Catheterization at MUSC May 16, 2013; discharged same day!
Initial sleep study to diagnose multiple sleep issues - January 30, 2012
After only NINE days, Rebekah is discharged on December 20, 2011
Open Heart Surgery Revision of Truncus and Unifocalization of Collateral Artery - December 12, 2011
Heart Catheterization at MUSC August 16; discharged the same day!
Hospitalized at GHS for respiratory illness and severe ear infection - March 31 - April 3, 2011
Heart Catheterization at MUSC March 7, 2011; discharged March 8, 2011
Hospitalized at GHS for respiratory illness - Dec. 11 - Dec. 14, 2010
After two weeks of recovery and unexplained fevers, Rebekah leaves MUSC - November 18, 2010
Open Heart Surgery to repair Rebekah's Truncus Arteriosus - November 5, 2010
CT Angiogram to check for growth of collaterals - March 26, 2010
ER visit found fistula at catheterization site March 11, 2010
Heart Catheterization March 9
Hospitalized at GMH for respiratory illness and chronic GI issues - Feb. 10 - Feb. 24, 2010
Surgical reinsertion of g-tube Jan. 21, 2010
Hospitalized at GMH for g-tube malfunction and respiratory illness Jan. 11 - Jan. 31, 2010
Hospitalized at GMH for respiratory illness - Dec. 17 - Dec. 24, 2009
Replacing Bekah's G-tube button with a Mic-key button- Nov. 18th
Rebekah's G-tube and Nissen procedure scheduled for September 28
Rebekah leaves MUSC to go home for the first time - July 22, 2009
Banding of Rebekah's left pulmonary artery - July 7, 2009
Rebekah arrived June 29th @ 1:40pm

REBEKAH GRACE ELLIS FUND

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Blog Archive

Tuesday, July 7, 2009

First Update

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Rebekah Grace

The Medical Highlights