Homage to a Hero: Dr. Dan Levi

Another one of the people who have been such an encouragement along the way.

 

Upon learning of Rudy’s diagnosis, the efforts I made to research HLHS treatment at UCLA led me to the Pediatric Cardiology website.  As I looked for points of contact, I came across Dan Levi’s webpage where two things caught my eye:  a title listing him as Director of the Pediatric Cardiology Fellowship and an undergraduate degree from Stanford.  I confess I’m not a very good alum and can’t remember a time I played the alma mater card (after all, it might not mean anything more than my dad and his writing a lot of checks to the same place 20 yrs ago), but it was worth a shot if it served to give me some leverage with someone in authority in the place my son needed treatment.  So I sent an e-mail explaining our diagnosis, asked what treatment might look like at UCLA and closing by pointing out our common Stanford tie but making it clear that this didn’t imply any inappropriate obligation.

 

The next day, just minutes after I got a “GO CARDINAL” e-mail telling me he would be calling shortly, Dan rang me on my cell phone.  Consistent with the conversation I had a day earlier with Gary Satou, I found comfort in speaking to someone knowledgeable in the scary mystery thrust on us.  Dan had good information, wise counsel and, more than anything, apparently as much time as I needed to ask questions and have information repeated.  He informed me of the steps UCLA had taken recently specifically in bringing on Brian Reemtsen to handle cases like ours.  He made it clear that I should contact him via phone or e-mail at any time if I had need.

 

Rudy’s early arrival prevented any chance of us having a chance to get acquainted ahead of time, but shortly after Rudy was placed in the CTICU, I met Dan in person.  I’m beginning to fear conversations with Dan as with each one we land on another common connection:  Stanford, people at Stanford, his parents live in SB, I’m acquainted with his aunt and uncle, we were born in the same town in NJ…I fear we’re not far from discovering that I bullied him at summer camp or egged his car in high school.

 

We’ve discovered so much about each other because Dan is personable and makes a point of stopping by and checking on us about as much as he checks on Rudy.  Right now, he’s not directly involved in Rudy’s care but, like most around here, seems to keep tabs on the Norwood patient.  There have been a few days where he’s come by and made mention that he wasn’t actually on floor duty.  Before we could compliment him on his dedication he explained, “I only come up here because the tea is free and buying it downstairs everyday would be really expensive.”  Given my reputation in every place I’ve worked of making excuses to drop by offices with free coffee and tasty snacks, I applaud Dan.

 

As Monday was a particularly rough day that left us unsettled, Trish and I were touched that he made a point of stopping in quickly just to offer some empathy stating “I don’t want to come by when things are only going well”.  In the years ahead, his specialty of heart catheterization will have him involved with some of Rudy’s key procedures down the line.  We’re grateful that coming back to UCLA for these will not only be a chance to receive excellent care, but a chance to see a friend.

 

Homage to a Hero: Dr. Gary Satou

 

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.

 

Dr. Satou checks on Rudy
Dr. Satou checks on Rudy