Judging by the conversations that I have been having with friends and family, I realize that I should probably further explain the situation right now with Tehilla.
Tehilla has HLHS. She essentially was born with half a heart. Through a series of 3 staged surgeries, the plan is to reconstruct her heart, so she can G-d willing, continue to live and thrive. Tehilla has had 2 of those staged surgeries: the Norwood and the Glenn. She also had an additional surgery in between those.
Right now, Tehilla is being a sweet, adorable, extremely fiesty two year old. She is doing fine right now on her Glenn. But, at some point, she will outgrow her Glenn and need the last surgery in the series: the Fontan. Without it, well, she can't survive. Obviously, we never want to get to the point where she critically needs the surgery. That time frame is around next year.
At the moment, Tehilla's blood pressure is out of control. We have spent nearly a year trying to get it under control with a wide variety of medications. Having such high blood pressure is weakening the muscles in Tehilla's heart. She takes a medication called Digoxin, that forces her heart to squeeze. Therefore, her heart is functioning, because this medication is forcing it to function. But she cannot have her Fontan surgery with her blood pressure as high as it is.
Our cardiologist believes that a certain part of Tehilla's aorta has narrowed. He is worried that some of the foreign tissue from Tehilla's first surgery is collapsing and causing her blood pressure problem.
Tehilla must have a heart catheter. The goals of the heart catheter are to 1) measure Tehilla's blood pressure from within her heart when she is sedated to get a very real idea of her blood pressure and 2) to take measurements of her aorta and investigate if there is narrowing.
If during the catheter, they find a very small area of narrowing, then they will insert a deflated balloon and inflate inside her heart to dilate the aorta. For many, this has saved them the need for an additional surgery. For some, it didn't fully work and surgery was necessary anyways.
If during the catheter, they find a bigger area of the aorta is narrowing, then we have no choice but for Tehilla to have heart surgery. It will be an incision under her arm pit, where they will go in and repair her aorta.
Tehilla's heart catheter is on March 28th. They specifically picked the
start of spring, because after any procedure, she will be more
susceptible to infection and illness. Spring simply is a healthier time
I have been asked several times over, "Okay...so what do we want? What should we pray for?"
There is only one answer- we want her to be a candidate for the Fontan. That's it. She must move forward and have the Fontan surgery. So, whatever we need to do, to get her there, is what needs to be. We have no choice. Whether it's a balloon dilation or heart surgery- whatever it takes to get her to her Fontan.
That's what you should pray for. That the doctors successfully find the cause of Tehilla's high blood pressure, that they find the correct method to get her blood pressure under control and that she heals and recovers well. That she be allowed to have her Fontan surgery.