Things People Have Asked...

It must seem odd to know us and watch Shrav being so active and happy much of the time, and wonder why she needs surgery at this point. What isn't obvious to a lot of people is that Shrav's oxygen levels fluctuate between 70-90% saturation. Typically, a person with oxygen levels at 90 or below becomes fatigued and wants to sleep a lot. The ability to exercise is limited and the large demands for nutrition and energy during growth are not met as easily...in fact, Shrav burns twice the number of calories doing the same activities as other kids - and yet she has very little desire to eat. So, it is hard to keep gaining weight with this energy equation. Low oxygen also impacts brain functions, although I won't try and explain that here. Lots of kids with complex hearts also have behavioral and learning challenges which aren't explained by traditional psychological assessments and diagnoses.

Shravani's oxygen levels are low because of the anatomy of her heart and the way her veins and arteries travel in and out and around her heart, lungs and other organs. Here is a short list of things going on with Shrav's heart:

- Atrial septal defect (ASD)
- Ventricular septal defect (VSD)
- Pulmonary Atresia
- TAPVC (totally anomalous pulmonary venous return) - say THAT 3 times fast

There are a few more things that are listed in her reports from India, but these are the ones that I hear the doctors mention. The cool thing - and I call it a God thing - is that no doctor has ever been able to detect a murmur when they listen to her heart with a stethoscope. It sounds just like a normal heart to them.

Most children who receive this surgery do it when they are less than 3 years old. Shrav's doctors wanted to wait until she was bigger so that her blood vessels are larger and there would be less need for potential surgery to replace things that don't grow along with the body. This surgery will involve using a Gore-tex tube to connect Shrav's inferior vena cava (big vein that returns blood to heart from lower body) to the pulmonary artery (PA). Most of you just said "huh?" or reached for a handful of chocolate chips to drown the confusion - or was that me?! The Gore-tex doesn't grow/expand along with the body, so this is the reason for waiting.  The surgeon did mention another possible method of connecting the big vein to the big artery but that requires more jargon and another handful of chocolate chips.  Will only go there if needed, later :).

Most heart doctors are very conservative and only recommend surgery when it is absolutely necessary. Although Shrav is not in a crisis, if we wait too long to do this, her lungs could lose their capacity for accepting the higher pressures that will follow it and the 'fix' could fail. Right now she is a good candidate because blood flow to the lungs is exactly how it should be in order for the Fontan to work.

Later I will try and talk more about the heart and all the stuff that will be affected, and try to give pictures. Don't feel obligated to read or look at any of it, I am doing it for those who have asked.

Love to everyone!