I can’t get very far in any discussion of what we’re going through with Rudy without soon singing the praises of the remarkable people who have been involved in his care. I am continually impressed by their excellence and their commitment to our family. I tear up watching them work and knowing that they watch him closely around the clock. If you’ve noticed I include a lot of names in the blog it’s because they don’t deserve to remain nameless. I want to remember them. I want Rudy to know them. While I can’t write extensive tributes to all of them (and hopefully won’t hurt anyone by omission), I’d like to create a more detailed record of some of these incredible people
Shortly after learning of our HLHS diagnosis, I found myself in a bit of a vortex of insurance referrals and appointment scheduling. I was trying to educate myself on the condition and also work to get Trish and Rudy to the best care possible. While several people were strongly advocating we go to Children’s Hospital at USC, our insurance network was directing us to UCLA. As I quickly realized that mounting a challenge to the insurance company’s decision could turn into a large battle I only had limited energy and resources for, I decided to at least do some due diligence on what resources UCLA could offer.
A web search got me the Pediatric Cardiology department phone number and a listing of faculty profiles and e-mails. I dialed the phone number and explained my situation to a very helpful woman who said she would consult with the department Chief and have someone get back to me. I followed up with e-mails to a couple of the faculty apologizing if this was an inappropriate means of contact, but I was a parent with an HLHS diagnosis who might be headed their way. Given my experience with medical bureaucracy so far, I didn’t hold much hope for any response.
Much to my surprise, my cell phone rang less than two hours later and I was speaking with Dr. Gary Satou, Director of the Pediatric Echocardiography Laboratory. Ironically, I was standing outside Cottage Hospital about to visit a friend recovering from his own heart surgery and spent 30 minutes pacing the lawn while Dr. Satou set the tone for the many conversations that have since followed with the UCLA team: compassionate concern, straightforward information about this difficult diagnosis, and patient answers to any and every question as they came to me. He said he would want to do a fetal echo himself when we came for a consultation, provided me with his e-mail and encouraged me to make contact whenever I needed to. He said he would be informing key members of the team immediately as he would want them to be available to see us when we could make the trip.
As the time came for the consult visit, Dr. Satou took the lead in getting Dr. Reemtsen and the NICU team lined up to see us. Instead of dealing with the typical appointment process, he set our appointments up himself making our convenience a priority. Our visit that day took close to two hours of his time as he did the exam, toured us through the facility and introduced us to others on the team.
First impressions mean a great deal, especially when they continue on through one’s subsequent experiences. I’m grateful that Dr. Satou was our introduction to the remarkable team here at UCLA and still remember getting choked up during that first phone conversation. Here was someone who understood our diagnosis in all it’s severity and was able to provide realistic hope. As our schedules haven’t aligned of late and we happened not to have been in the room during his usual rounds, we were glad his visit this afternoon. I once again appreciated his concern for us as he broke from the group rounds and took time for an extended visit. I am grateful for his concern for and interest in our family as a whole as he asked about how our other kids are doing. As UCLA is a teaching hospital I am so glad future doctors are able to watch and learn from him, but making no apologies for my own self-interest, I’m more grateful for the attention and care we have received from him.