I got a call today from cardiology to schedule Parkers upcoming heart procedure. I immediately was over come with emotions… Let me back track a little. Since Parker was born we have done an Echocardiogram every 3 months per the Cardiologists orders. This is to monitor his heart and make sure that his SVAS (Supravalular Aortic Stenosis or Pulmonary Stenosis) hasn’t progressed from mild to moderate or severe. We have done all 3 under sedation medicine. This is to ensure the best possible pictures. Each time Parker has had to fast for 6 hours prior. When we get there he eats a little bit of medicine that makes him sleep. He gags, chokes and his eyes water. It’s awful. This in done in an area outside the hospital and with a nurse and lab technition. It makes for a long hard day. We usually meet with the doctor after and he goes over the test results with us.
This last time we went in was when Parker was 9 months old. His heart progressed from Mild – Moderate. We were so upset. He seemed so great and so healthy and I just couldn’t believe it. The doctor said that open-heart surgery was “most likely” and we would have to monitor him closely. Because Parkers heart has gotten worse the doctor suggested that we schedule and EKG for our next appointment since it is now more risky to sedate him. The reason it is risky is because when you sedate someone their blood pressure drops and because the narrowing in his valves is getting worse he has more risk of going into cardiac arrest.
So over the next 5 months we went into see our Cardiologist to do EKG’s and listen to his heart. The last time we went in he suggested that we take a closer look at his heart and see how it’s doing. So apparently we are faced with a very scary decision. 1. Do we do an Echo under the sedation medicine, which is less risky to Parker but if something terrible happens while he’s under (blood pressure dropping or cardiac arrest) we are not in the hands of professional doctors or anesthesiologists. We are with the nurse and ultrasound technician. 2. Our cardiologist suggested that we do a CT scan or Echo under general anesthesia and although this is way more risky to Parker he is in the hands of doctors who can help him if something goes wrong. Also, they have more control over the medicine since it’s administered from an anesthesiologist. Now, did I mention that anesthesia is VERY risky for kids with Williams Syndrome? Kids die. Actually a little boy passed away at the exact hospital in December.. Pretty much the same exact situation. This is a decision that no parent wants to make. I am not a doctor. I sell shampoo and my husband sells wine. How do we decide on something so life threatening to our baby boy? There comes a point when you have to trust. So we decided to book the Echo under general anesthesia. So that is the call I just receieved. Oct 6th 2014. We have to take him in, prepare to spend the night and bring his favorite toy or blanket.. Can someone please shoot me.