Averi’s Story

Averi's Caring BridgeThe Averi Budde Foundation is a non-profit organization founded in 2007 to benefit St. Louis Children’s Hospital and SSM Cardinal Glennon Children’s Medical Center after the birth of Averi Rose Budde on May 25th, 2007. Averi was born a twin to Adison Paige Budde. Averi was diagnosed with several heart defects including Tetralogy of Fallot with Pulmonary Atresia, Arterial Septal Defect and Ventricular Septal Defects (holes in her heart).

The wonderful loving and dedicated nursing care Averi received in the CICU and 7 W units along with the warm way our family felt during Averi’s many stays at St. Louis Children’s Hospital and SSM Cardinal Glennon Children’s Medical Center, knowing she was always in the best hands helped relieve her parents and enabled them to rest at home, if only for a while, to spend time with Averi’s twin Adison.

Because of our wonderful experience with St. Louis Children’s Hosiptal and SSM Cardinal Glennon Children’s Medical Center our family wanted to “give back”.   The Averi Budde Foundation was formed to provide nursing scholarships to the Cardiac Nurses at St. Louis Children’s Hospital for continuing education. We also provide financial support to Camp Rhythm and short-term support to St. Louis Children’s Hospital heart families in need.

Averi’s first surgery required her to go onto bypass, which was not anticipated before surgery. It was supposed to be a 3 hour procedure that took a little over 8 hours. Her vessels were just too tiny, more so than we thought, so her body required a central shunt from the Aorta straight to her Pulmonary artery. She had a very difficult time during surgery and gave everyone quite a scare.  Her first few weeks were critical, her blood pressure was hard to stabilize and the doctors stayed in her room. The first few weeks after surgery brought many ups and downs and scary times. With lots of help from my nurses, docs, family and prayers she had begun to take steps towards recovery.

Her second surgery was going to be about 9 months later, but after her diagnostic Cardiac Cath on August 27, the doctors decided she could not wait that long and scheduled her surgery for one week later September 4, 2007.

On September 4th surgery was 5 1/2 hours and went very smooth. She did very well going on and off heart/lung bypass and my full repair was achieved.  She now has normal oxygen levels.  However, she suffered a heart attack sometime after surgery and had difficulty with her ejection fraction (the pumping of the heart.)

On April 8, 2008 we went to cardiology appointment and received our first good news. With the help of a big dose of Enalapril, her heart function (ejection fraction) has returned to 57%.  The normal ejection fraction is 60% so we do not have to see cardiology for 6 months.

On October 28, 2008 our cardiology appointment revealed that her pulmonary artery is 40% closed and leaking.  However, we are hopeful that she can maintain well until April where we will then do a cath and stent the pulmonary artery in hopes to prolong replacement of the artery for another year.  Also, her heart function looks good, but we are staying on Enalapril until April just to make sure!

On January 8, 2009, we went for a cardiac cath and it was decided the pressures in her heart were too high and the pulmonary homograft was too closed.  So on January 9th she had her 3rd open heart surgery to replace the homograft.  She now has 16 mm RV-PA homograft that should hopefully carry her until she is around 8 to 10 years of age.  She suffered a few seizures after the surgery and  awaiting an MRI in Feb 09 to rule out any stroke activity.  She is now home and doing beautifully!

In December 2011, Averi had a cardiac cath that determined her pulmonary valve had narrowed again requiring intervention.  A stent was placed inside the conduit to give us time to get through cold/flu season.  A small PFO (hole) was found during the cath that was a surprise to us and a cribriform device was placed to close the hole.  It was determined a few months after the cath that Averi was calcifying around the stent so discussion was made to plan surgery.

On June 5, 2012  Averi had her 4th open heart surgery to replace the valve.  She had a quick uneventful recovery and returned to her favorite gymnastics.  Jan 4, 2013 was our 6 month follow-up and found to have significant narrowing in her valve already.  So the plan is to head to the cath lab in the near future and prepare for open heart number 5.

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