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6/13/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Here is some background, as many have asked what she/we are dealing with (in my very non-medical nomenclature).
As you may or may not know, Jenna lives on a very different heart than most of us. She was born with six congenital heart defects. She was diagnosed in-utero, which was not common for babies at that time (about 10%). She had two surgeries as a baby to rectify the problem using a surgical procedure called a fontan. Since that time, she has been followed by the highly skilled team of Pediatric Cardiologists at U of M. We are so fortunate and blessed that she has been healthy and able to thrive in life, with almost no limitations.
In general, about one in a hundred children are born with heart defects. Jenna's case with multiple defects is certainly more rare, but not without significant practice. As one of a handful of well known centers in the world, U of M cares for over 300 patients with similar conditions and thousands more at various levels of complexity.
So, what brings us to today....
For the past five or six years, Jenna's oxygen saturation level has been going down a percent or so per year on average. Her sats are currently in the low 80th percentile. Most of us would run at or near 100%. Late last year, the team began to examine "why" though cath, echo, CT, X-ray, other lab and procedures. Going into her cath last October, they suspected a couple of potential causes. Unfortunately, it happened to be a problem that could not be handled in the cath lab and would need to be corrected surgically.
It was determined that she has developed something called AV malformations in her right lung which is not allowing full capacity, particularly with oxygenated blood flow from the lower part of her body that has come through her liver. AV malformations are tiny vesicles that are amazingly inherent in us all, but naturally close off with blood that has flowed through the liver due to the presence of some secretion produced by the liver. The phenomena pertaining to this secretion has been known by the medical community for thirty-plus years, yet they have yet to isolate it or determine exactly what it is. Hence, the study of medicine.
Jenna's surgery today will involve redirecting more lower body blood flow to her right lung to rectify the AV malformations. The objective is to enhance her O2 saturation, which will increase gradually in coming months. This will be accomplished by re-positioning an extra-cardiac conduit (an artificial tube) that was placed during her initial surgeries. Technically, we are told it is not anywhere near the scale of what was accomplished as a baby. There is even a chance they can do this off-bypass. Not minimizing that fact that heart surgery is serious business and no eighteen year old should have to endure it! We wish so much that she did not have to go through this and are eager to get this over with.
So, please join us in praying for Jenna today and in coming days as she recovers. May the Lord give her the strength to endure this surgery. May He calm her worries and fears. May He provide the surgeon and all the care givers the eyes to see and act in a manner that provides the successful outcome we anticipate. Also, for Heather, Emma, myself and our family and friends, please help calm our worries as we know you are in control and watching over our baby. Amen