We decided to get a second opinion for Parker’s heart. I wasn’t sure even where to begin. Do I get a second opinion at Rady’s Children’s Hospital which is the same place where we go now? Or do I go to a completely new hospital? The problem is that Williams Syndrome is so rare, 1 in 10,000. I want to go to someone that understands Williams Syndrome more then we do. I don’t want to be the doctor or the anesthesiologist… I just want to be the mom. You can’t just Google Cardiologists with experience with Williams Syndrome. It’s just not that easy. Luckily for us there is Facebook. We belong to a private group on Facebook that is just for parents with children with Williams Syndrome. Although it can be overwhelming at times, It can also be a great way to ask questions to other moms and talk to people who just get it.
So, I was speaking with one of the moms on Facebook and she mentioned I should get a second opinion at Children’s Hospital Los Angeles. She gave me a few suggestions of doctors. I called and tried to get in but had no luck. A few weeks later her daughter was sick in the hospital (I knew because we know everything about everyone from Facebook.. right?) Anyway, this mom messaged me and said that she happened to run into the Cardiologist and told her about Parker and gave me the Doctors personal cell and email address! Are you kidding me? Who does this? Who thinks of someone they have never met while their child is sick in the hospital?
Two days later I got a call from the scheduler to book his appointment for a second opinion. I needed to get Parker in before his Oct 6th Echocardiogram under Anesthesia and possible Heart Cath.
On September 25th we drove up to LA at 5am. I was nervous. What if the Cardiologist had something completely different to say? What if I leave the appointment even more confused then before? Luckily, my husband calmed me down and we made the 2.5hr drive.
So here is the most amazing part of this story. I thought I was bringing in Parkers past records and she was going to give me a second opinion. She ordered her own set of tests, one of them being an ECHO. So guess what… we did an Echo with NO DRUGS AT ALL. We didn’t sedate him. We didn’t make him fast. He didn’t gag and cry. He laid there with a TV on and I distracted him with toys! Are you FUC*%NG KIDDING ME? This is an option??? Why did I not know this? Why have we done 3 sedated ECHO’s since Parker was born and put his life at risk? Why in the hell do we have an appointment on Oct 6th to put him under General Anesthesia which is the most risky thing you can do to a child with Williams Syndrome? Why did I bring my concerns up to our Cardiologist about Anesthesia multiple times and I didn’t know this was an option!? I was an emotional wreck. I cried and was furious and relieved all at the same time. I feel like we just missed getting hit by a car. I was SO nervous for my babies life that I scheduled family photos before his procedure just in case he didn’t make it. ARE YOU KIDDING ME?
His heart has not changed from the last Echo we did. The numbers stayed the same. Although she says open heart surgery is inevitable. I cancelled his appointment on October 6th and I could not be happier about it. One day at a time and for now I am celebrating.