Update

We had a CT this morning, which has good and bad news. The good news is there is no pulmonary embolism. Bad news is he does have a clot in his superior vena cava, the big vein that goes back into the heart. They called cardiology to come by. Of course they didn't have anything meaningful to say. They said to call hemo. So hemo is coming by tomorrow. The goal is to get them to order an echo. The cardiologist think it may not even be a clot. Just a narrowing of his SVC for some reason. But he's got a bunch of collaterals around it. I still think he is in some heart failure and I also want the echo to look at his function, but the echo will also show if there is a clot or not.
He is having some funky heart rates. I mentioned this to my doc. I could kind of see it on my pulse ox. But it jumps all over the place. Cardiology did see it and still had nothing meaningful to say. We'll see what happens tomorrow, if the echo gets done or not. Then I may have to call my pediatrician to do some screaming if we don't get what we want.
If there is a clot there, then we have to wonder why he is still clotting on blood thinners, that makes me really nervous, because he could potentially have a pulmonary embolism in the future.
I will update tomorrow when I know some more, thanks for your prayers.