Update - I apologize if this gets long! We brought Will in because he was having tet spells. This is when he turns blue because his lungs arent getting enough oxygen. They pass quickly so the cardiologists couldnt catch them during his appointments and his oxygen saturation always stayed high. Once we got here and he was hooked up he kept dropping into the 70s with his oxygen and then popping back up quickly. He didnt show any outward signs, so it made me realize he was probably doing this at home a lot and we never knew. He hasnt had any tet spells while here, so no idea what his levels are during those. The cardiologists said he has some pretty significant stenosis (narrowing) on his pulmonary artery, below the valve. They started him on a beta blocker to slow down his heart rate and stabilize it. (Propanalol). Since starting last night he has been very stable. We are waiting to hear from the surgeons about the plan of action. Since he has weight issues a shunt is not an option and they are considering whether to go ahead and do his full repair. He is smaller than they like to do the surgery, but it may be time with his increased spells. We are also waiting to hear from endocrinology about his lack of weight gain. He is at the maximum level of fortifying and is still not gaining any weight. He has been the same for 2 weeks now at 6 lbs 8 oz. The doctors want to make sure there isnt another issue and we are just blaming it on the heart. Hopefully everything will be clear! The pediatric cardiology department here at MUSC is amazing and taking very good care of Will. I am very confident that they will make the best decision for him. Surgery is inevitable with his defect, and its just a discussion of the best time. This does not mean that Wills health is any different than we have known all along - things are just changing as we knew they would. Hes a strong and happy little boy and Im so glad we have this amazing resource. And of course this is all happening on Maes 4th birthday. Good thing she is a tough little girl who has no doubts the world still revolves around her. Happy Birthday Mae!!! If yall have any questions, I will do my best to answer. :)
Posted on: Tue, 22 Apr 2014 16:01:00 +0000
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