Phone Conversation

After a few rounds of phone tag, I was finally able to speak with Julie over the phone. She lives in Knoxville, TN and visits Charleston from time to time.
She insisted on telling me her son’s story and said she wanted to somehow pay it forward with the knowledge she gained from her experience. She went on to explain that she had watched a news bit on tv about young athletes collapsing due to undetected heart problems. After watching that she started thinking about her son Magnus, who always looked wiped out after sports practice. So she scheduled an appointment with his pediatrician who casually referred them to a cardiologist. The doctor explained that he thought her son was perfectly healthy but this referral was just to ease her pregnant at the time mind. They would eventually discover that her son did indeed have serious complications with his heart which would require complicated open heart surgery. She went to the best hospitals (in the Northeast and Midwest) to interview different doctors and their diagnosis and treatment plans were all similar. Her final stop was Boston Children’s Hospital. Dr. Pedro del Nido, chief of Pediatric Cardiology, looked at her sons records and saw a completely different scenario. With his experience he was able to see several congenital defects that were missed by all the other hospitals and explained that her son was lucky to be alive. After a few weeks the surgery was scheduled and a success. Dr. del Nido even had to make several quick decisions during the surgery as things were worse than he thought. Anyway Julie went on about how many opinions she got for her son and how she had been to so many different hospitals. She basically was saying how important second opinions are and that if my son needed heart surgery she knew the best surgeon and that the best hospital was Boston Children’s Hospital. She praised and praised them. So to make a long story short we have gathered up all of Watson’s records and sent them to Dr. del Nido. From what I’ve researched about this dr and hospital it seems more and more like the place to go. I cannot thank Julie enough for speaking with me. She was so pleasant and it really was nice to hear from someone who has been in similar shoes. I know Watson’s condition isn’t nearly as bad as her sons, but still if my son is going to have his chest cracked open and be put on a heart and lung bypass machine while they repair a 1.4cm hole in his heart, I want the best.


A chance encounter

I’d been doing a lot of research on open heart surgeries and different hospitals. I had found many blogs out there with similar stories to ours, but wasn’t feeling very confident on exactly what to do with the news about Watson. It was interesting how a chance encounter my mother in law, Joan, would have with a woman would really impact the direction we are now heading in. One Saturday afternoon my mother in law was helping a woman pick out a necklace for her son at the jewelry store she works at. The woman, Julie, explained that her son deserved something special and that he had just had open heart surgery. Joan explained that her grandson was going to need open heart surgery. The woman went on and on about how excellent Boston Children’s Hospital was and that their surgeon Dr. Pedro Del Nido was the best. She suggested that we speak and gave Joan her email address for me. I began to research Boston Children’s Hospital and Dr. Pedro Del Nido and what I found gave me comfort for the first time. The hospital is ranked as number one for Pediatric Cardiology and this doctor is pretty much a pioneer in open heart surgery and cardiac catheterization. It seems like he is the very best in the field. I want the very best for Watson. It seems like the answer was placed in my hand. I emailed Julie and eagerly waited to speak with her over the phone.

Sedated EKG

After waiting for months we finally got the news that Watson’s ASD had mostly remained the same. He had a sedated EKG in June which I was terrified for. Once the day of his appointment finally arrived, he seemed in good spirits. He was even ok without having his morning bottle. Upon our check in at the hospital he was all smiles. We were going strong until a nurse tried to get his blood pressure. For some reason that set him off and he started screaming and crying. Never mind his blood pressure, I was through the roof. Other nurses gathered around to help. Unfortunately he wasn’t having any of that. They eventually gave up. The sedation went better than I expected. The nurses just filled up a syringe with liquid from what look like a juice cup and squirted it down Watson’s mouth. He handled that really well and was off to sleep in about 5 or 10 minutes. Greg and I sat in the room playing chess silently on our laptop while the EKG¬† was preformed. As soon as they were done Watson woke up in a flash. His balance was off and he was unable to hold up his head properly. Then we were on to yet another room for the Dr’s report. Unfortunately the hole in Watson’s heart has not disappeared. They were able to get a better view of it. The Dr. said it was slightly larger than he originally thought, about 1.4 cm in size. He suggested a follow up appointment in 6 months and recommended surgery around 3 years old. And just like that reality set in again. My little boy was going to need surgery.