A lot of you have asked me about what is exactly happening in Reece's heart and lungs. And I'd like to take this time to try and explain it in its most simplest form.
Reece's diagnosis is tetralogy of fallot with severe peripheral pulmonary artery stenosis. Here's what a normal heart looks like and here is what Reece's heart looks like.
"Reece's lung arteries are abnormal. They aren't growing. Unfortunately, surgery cannot fix this. His heart will fail. Continuing these procedures is too dangerous. Let him be a kid until he can't anymore. Don't send Reece into the cath lab anymore."
Umm. What?
The reason why these procedures are dangerous for Reece is because of the type of abnormal tissue his lung arteries are made of. On top of that, they are very small. When you try to balloon the arteries, you run an extreme risk of rupturing the arteries, which causes bleeding in the lungs. If doctors are unable to stop the bleeding and his lungs fill with blood, he will not survive. The cath doctor in Atlanta told us, "It's too risky. We can be successful 9 out of 10 times, but that 10th time ..."
The left side of your heart pumps blood to your body. The right side of your heart pumps blood to your lungs. Well, in Reece's case, because the arteries are so small, the right side of his heart is working extremely hard to push blood into his lungs ... causing high right-sided heart pressures. We've been told he isn't a candidate for heart transplant because his lungs are bad. And we've been told he isn't a candidate for a lung transplant because of his congenital heart defect. Could he get a heart-lung transplant? Yes. But we've been advised to stay away from that due to very low success rate.
So here we are. Hearing for the first time that between the ages of 2 and 5 our son's heart will fail. Atlanta says stop with the procedures, it's too dangerous. Vanderbuilt said, "I"m sorry. We can't help. It's too dangerous." But Boston. Boston says, "Yes. We can help Reece." But they don't ever forget to tell us how dangerous the procedure can be. And we experienced that in Atlanta when a distal artery in his right lung was ruptured. Thankfully the bleeding was stopped. But to stop the bleed, one of the main arteries in his lung had to be coiled. When he needs all the arteries he can get, this last procedure cost him some.
Our options? Watch Reece's heart fail between the ages of 2 and 5. Or send him to Boston where there are two interventional cardiac cath doctors that have experience that can't compare to anyone else in the country, understanding the risks. If we don't do it, we know what will happen. If we do do it, we know what could happen. It's a decision no parent of a 1 year old should have to make.
But guess what? We will not give up on our son. We would go to Antarctica if it meant he would get the help he needed. It's been the easiest, most difficult decision we've ever had to make. But we know that this is what we have to do. We know this is where God is sending us. And for good reason.
And as I'm struggling with this day quickly approaching praying we are making the right decision, here is today's devotional.
I love you with an everlasting Love that flows out from eternity without limits or conditions. I have clothed you in My robe of righteousness, and this is an eternal transaction: Nothing and no one can reverse it. Therefore, your accomplishment as a Christian has no bearing on My Love for you. Even your ability to assess how well you are doing on a given day is flawed. Your limited human perspective and the condition of your body, with its mercurial variations, distort your evaluations.
Bring your performance anxiety to Me, and receive in its place My unfailing Love. Try to stay conscious of My loving Presence with you in all that you do, and I will direct your steps.
Amazing.
And if you've made it to the end of today's entry, here's a little audio clip to make you smile ... Reece laughing to mommy dancing to "I whip my hair back and forth, I whip my hair back and forth!"
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