The doc finally called this evening. He said the results look good. His lowest heart rate was 60 and that is fine at his age on a beta blocker. His QTc's (the numbers they look at to determine risk) were good overall, he had one that was high risk. He said that they go mostly by what they see overall and he said overall his look good. He thinks that he is doing fine on the beta blocker and so we will continue to use it. Contact him if we have any issues. Otherwise he will see him in his office in March.
Now we focus on adjusting to all this and trying to find a new normal. I want to relax and trust the doc, but I can't deny the risks of the condition and I am afraid even though things look pretty good right now. Don't get me wrong, I am happy to see a good report, very happy. He is doing fine without side effects on the current meds and I am glad he is able to stick with them and not have to deal with trying to switch to a new med we are unsure of how he will react to.
So now we work on getting genetic testing for Hunter. I filled out the new requisition forms today and will mail back tomorrow. It can take two months for the insurance company to determine whether or not they will cover it.
Also, we are still fighting the insurance company. We are in formal appeal. They have until next Wed. to make a decision. We are fighting because we are right, the AED is coverable, and they are wrong. If we win and end up with an AED we purchased and one from the insurance company we will be ahead of the game if Hunter has the same condition. Since they would each need their own. If not then we could have one for home and one that stayed in the car. I want to win mostly because I think someone needs to teach insurance companies that they can't just go against their own policies and deny deny deny and screw people over.
We ordered the AED for Mason and we also ordered him a medic alert bracelet that is actually a waterproof USB when you open it. You can personally put all medical history, allergies, meds, test results, etc. on it and it can be plugged into any computer at hospital or doc's office for review. I think it will be super convenient since Mason has such an extensive list of medicine he is restricted from taking and it is not feasible to always be carrying the huge binder around with all that info and med records. It will also ensure his medical records are instantly available to EMS in the event of an emergency.