Killing time at the Starbucks on the fifth floor of Seattle Children’s Hospital. Don’t let the juice box fool you- he didn’t actually drink any of it.
Yesterday Chuck, Apollo and I all headed down to Seattle to get more information on just exactly what is wrong with Apollo’s heart. When they found the artery compressing his esophagus back in April, the push was just to get the g-tube in so the poor kid could eat. Apollo’s cardiologist away while he was admitted, so this is the first time we’ve had a chance to talk to him. In the intervening time I’ve been in contact with his cardiologist both on the phone and through email and he’s sent Apollo’s records to a doctor in Chicago for a second opinion. Yesterday was the meeting to finally talk face to face.
We knew something was up when the nurse said she needed to take his blood pressure on all four of his extremities.
Okay, this is so involved and complicated, it took the cardiologist literally 20 minutes of drawing sketches of hearts to describe this….I’ll just tell you what I know and may need to edit it later as we learn and understand more.
He started by saying the diagnosis of a double aortic arch was never in question. That was perfectly clear in the MRI, it was clear in the ECHO and it was clear during the surgery. That has been corrected. We’ve seen the evidence of that ourselves with his improved breathing. The question then, is why is his esophagus still compressed? It may be an artery. It could be that there is still some ligamentum attached or it could be something else. It could be both. Ligamentum, which is basically just a bit of fibrous tissue, cannot be seen in MRI, CT scan, or any other test. Since no one is 100% sure what it is, there is no way of knowing whether or not it can be corrected. Was this always here? Is it new since surgery? Since Apollo never had a swallow study or Upper GI before the surgery, we don’t know.
This, according to our cardiologist, is most likely a complication from the double aortic arch division.
On top of this, he has grown new blood vessels since the double aortic arch division. His body, apparently trying to repair itself, is growing new vessels, but these may be interfering with things as well.
At this point, according to our cardiologist, everything is on the table. Surgery may be a possibility, but they have no idea of whether or not it will help his esophagus. Or how much it will help. Or for how long. Furthermore, the area is now full of scar tissue which makes the surgery more difficult and he has a higher risk of complications. Interestingly, the doctor in Chicago who reviewed Apollo’s case said he would go in through the left side again, not through the chest.
So why not just leave things are as they are? First off, while having a g-tube keeps him fed, it in itself is not risk free. He’s has three infections in the three months he’s had it. He’s eating mostly formula, not food. And the longer he has the tube the less he wants to eat. Not to mention, his is at major risk for choking when he does eat. When food gets stuck in his esophagus it pushes on the soft spots in his trachea and he can’t dislodge them. He’s has several choking incidents, one bad enough I had to call 911.
And now that his left subclavian artery isn’t working, his is at risk for other complications. Our cardiologist said this is usually okay in kids, but as he gets older it will be more of a problem. He may lose function in his left arm. He may get dizzy and lose his balance as he gets older, he may not be able to keep up with is peers in physical activity. If I understand correctly, his smaller, younger body can function with blood flow like this. His adult body may not. In his cardiologist’s words, “he will have to be followed closely” by a cardiologist for the rest of his life.
Don’t let that smile fool you. He screamed for so long and so hard the cardiologist had to call in a nurse to help with him just so we could have a conversation.
Unlike the double aortic arch division where there was no decision-making (surgery was 100% necessary), there are a lot of choices to be made now. We are scheduled to go back and see his cardiologist in September. He wanted to give us time to digest this, understand it a bit and be able to formulate more questions.