pediatric cardiologist

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.

Good Morning Dear Friends,

A big thank you goes out to all for your continued prayers and messages of love and concern. So many have asked how the insurance stuff is going and I held off sending another update on that until we had more concrete information to share…It looks like we are moving ahead on treatment and care so here is the latest:

After the request for care at Children’s Hospital LA was denied, Rolf and a bunch of other dear souls (including our agent who set up the coverage) got to work on an appeal. In the meantime, the insurance company redirected us to UCLA because they are within our “network” and we felt it would be important to do our “due diligence” and get to know the UCLA team and their facility as best we could so we could make informed decisions…

Although we have not found the administrative system at UCLA to be as “user friendly” as Children’s, we have been very impressed with the medical team that will care for Rudy. When making initial contact with the doctors we were authorized to go to required numerous phone calls with no results, Rolf finally looked up the head doctors of each department on the hospital website, found email addresses, and emailed them directly explaining our situation. Within hours he heard back from each of them either by phone call or email!!!! They all insisted on seeing us personally and had their “people” rearrange their schedules so we could stack them all on one day. Once we bypassed the hospital’s system and got on the doctors’ radars, we’ve been in close contact with them.

As it stands now, I believe the appeal is still in the works but, at this point, we have run out of time and although we wish we could go to Children’s and take advantage of all their amenities and resources, we are convinced after being at UCLA that the care Rudy will receive is comparable and that is what is most important.

Rolf and I spent all day at UCLA on Monday…it was very strange to be back there as we had all of our kids at the old UCLA Med. Center…the high risk OB that will take over our case is even in the same office as my old OB (who, sadly, isn’t there anymore as I was hoping to have her involved in this delivery as well). The Mattel Children’s Hospital at UCLA is located in the brand new Ronald Reagan Medical Center – they just moved in a month ago – and it is beautiful. We met with the surgeon who will do Rudy’s procedure, the head pediatric cardiologist, the head neonatal pediatrician, and the high risk OB…they ran a battery of comprehensive tests and were very generous with their time…the surgeon himself sat with us for an hour explaining the procedure and answering our questions!!! Physically it was exhausting, emotionally it was heart-wrenching but, bottom-line, we felt our prayers for peace of mind about UCLA had been answered. The reality important for us to remember is that we had a choice between two good medical facilities when so many families in rural parts of our country don’t have any options at all! God is so much bigger than all the confusion and clerical mistakes between the various insurance parties that held this whole process up for us…and we feel, now, that we can rest in where we have landed.

What to expect AND how to pray…

So, now, the next phase of this journey begins! Although we don’t have HARD dates on the calendar yet, it looks like they will induce labor the week of October 21^st (two weeks before my due date)…the OB wants me to relocate to LA sometime the week of October 6^th in case I go into premature labor. This is much earlier than I was planning to go down and has put me in a bit of an emotional frenzy…I just don’t want to be away from home/family that long. I’m still weighing that decision very carefully. If Rudy remains strong, we are going to try and deliver naturally. Once Rudy is delivered, he will undergo a bunch of tests in preparation for surgery which will take place 2-5 days after delivery. During that time, the children will be able to see him and hold his little hand but they won’t be able to hold him as I had hoped. I also won’t be able to nurse him right away…they won’t let him eat for 2 weeks! This is a BIG prayer request as many babies with HLHS have problems eating and end up with long-term digestive problems. The team is very supportive of me nursing him when he is finally able to eat so I will work at getting my milk to flow and keeping it flowing the first few weeks. Please pray that he’ll smoothly latch on when the time comes!!!

Speed and accuracy are essential to the success of Rudy’s open heart surgery…the whole procedure should only last 2 hours and the work on the heart a mere 40 minutes but a lot of really important stuff happens in that time and a lot of really bad things can go wrong in that time! Rudy will be in an extremely critical state (I’ll spare you the gruesome details) for a couple of days after surgery. At that point, he will be moved back to the NICU where he will stay until he is discharged. If all goes perfect, we could bring him home as early as 21 days after surgery…this would put us home right before Thanksgiving!

To be honest, emotionally it is hard because I want to do whatever it takes to give my baby a chance at life here on earth and yet I hate the thought of him going through what has to be done – with no guarantees! I’m reading a book right now by a mother who lost her son to HLHS and she writes, “Two of the most primal parental instincts are to keep your child alive and to protect your child from pain. Those instincts usually do not collide. With our baby, they did.” IT IS SO TRUE! I so understand this conflict of interest and it literally breaks my heart. So, we move forward continuing to pray for peace and God’s direction as we choose to pursue life for this baby. The practical and emotional impact all this will have on our family is starting to weigh heavy on me but then we have an interaction with one of the kids that reminds me that we are starting off on a firm foundation of love and compassion. i.e. Rolf and I had to sit Max down a few days ago to tell him that we couldn’t let him do sports again this fall – something we denied him last fall because we just moved into our house and we wanted to get everyone settled. We were bracing ourselves for a strong reaction from him as all he talked about ALL SUMMER was how much he was looking forward to either football or soccer this fall. After we explained to him that we just couldn’t commit to it this fall, he thought for a minute and said with disappointment but calmly, “I guess that’s okay. I’d rather have a baby brother than play sports anyway”. The children are doing fantastic but I continue to pray for them fervently as the sacrifices and stress will start to affect them more directly as time goes on.

And so, I humbly ask you to keep praying…the prayer needs are so numerous I can’t even begin to list them all so I trust the Spirit will guide you specifically as you pray. I’m still praying for a miracle – that the left side of his heart will begin to develop and, also, that the right side of his heart will continue to stay strong even though it has to work so hard.

With much love and gratitude, Trish