What’s Apollo hiding? A tough little heart that just didn’t develop quite right.
I know I said I wasn’t going to blog about Apollo today, but I have an update.
Our family doctor called Friday. He talked to cardiologist who assisted with Apollo’s MRI down in Seattle. He told me that the left side of his aortic arch is a functioning artery. This is bad news. It means that they now have to cut/remove a working artery, with the risk that entails, and also make sure that his heart will still be able to pump blood efficiently.
Image taken from Penn Medicine.
In the second image, you can see how part of the aortic arch goes to the left of the trachea and esophagus. In the best case scenario, this would just be an old vessel that didn’t recede during development like it was supposed to. In Apollo’s case, it is pumping blood from his heart.
A few people have wondered why his symptoms are difficulty breathing and eating if it is a heart defect. In the diagram, you can see how the artery wraps entirely around windpipe and esophagus (where his food goes down). Basically he is being strangled 24 hours a day by his own heart. As he gets bigger the constriction gets tighter and his symptoms get worse.
Our doctor also told me that the cardiologists who viewed Apollo’s MRI “wondered how this could have possibly been missed during the bronchoscopy due to the severe restriction of his airway”.
Here is what I posted on December 21, the day after the bronchoscopy was preformed:
As far as the bronch the doctor said (and I am going to quote him a lot here): “There is some slight narrowing, but not too bad.” “It’s a bit abnormal.” “He could have a vascular ring or sling.” “It looks borderline” “I’ve never seen a patient this old get diagnosed with a vascular ring and then need surgery.” “If he has a ring, he’s probably grown large enough that it’s not a concern anymore.” “We’ll consider an MRI or CT scan if his symptoms get worse.” “Since he’s growing, he’s fine.”
I said to my doctor, “You know that ENT was convinced that nothing was wrong with Apollo beyond allergies and I think, because he is human, he allowed that belief to influence the way he read the bronch”.
“I think you’re absolutely right” was his answer.
We may pursue a formal complaint against the ENT (I have already requested all of Apollo’s records from our doctor’s office). I plan to carry a copy with me to every doctor’s appointment and hospital visit (a trick I learned from the book Doctor Your Patient Will See You Now). I will be able see for myself exactly what he wrote in his report. For now though, I am focusing on getting Apollo what he needs.
Even though we are still waiting to see a cardiologist, they are working on Apollo’s case already. The cardiologist was working already to meet with the surgeon and pulmonologist to discuss his case. I feels good to know they are already meeting and planning for his care.