So... the results... Jake has 3 out of the 5 indicators for being at risk for sudden death.
The other two indicators are a test they did not perform on him, and family history which is imcomplete. They strongly recommend the Implantable cardioverter defibrillator. He will have it implanted Wednesday. The defibrillator will help his heart continue to beat, shocking it into the right rhythm, if needed. He has some obstruction but doesn't need the myectomy yet. We have to keep an eye on it.
I can't even describe the feeling I had when we saw the MRI scans showing the actual size of the septum thickness. I kept trying to picture it using the pictures from the internet, but actually seeing it, slice by slice and see the thickeness completely through the heart, I still can't describe it. The doctor spent a long time with us explaining everything to us, making sure all our questions were answered.
Tomorrow,we are meeting with the doctor who will actually implant the defibrillator on Wednesday. Even though he will have the defibrillator he still will have limited activities. If he does strenuous activities, the defribrillator will shock him which is not pleasant.
Jenn's wall thickness was borderline. The doctor would like to do an MRI to get a more detailed picture of the thickness to see if she has HCM or not. He is going to see if we can have it done while we are up here. She is NOT excited about it, she hates needles.
The beta blockers Jake is on could be the reason he is sleeping all the time, so we are going to switch that but not until after the defibrillator is implanted. AND they drew blood today for genetic testing , we won't know the results of that for a couple months but hopefully if it pinpoints the mutated gene, it will be easier to test other family members.
Jacob is doing fine. He likes the doctor and his special hand shake. He doesn't seem anxious about the surgery. He is his normal everyday self, picking on his sister every chance he gets. The only thing that seems to be bothering him is me.... because I keep taking pictures of everything, and I'm enforcing the 2000mg daily sodium intake.