I was looking over past entries this weekend as I sat here with Rudy and enjoyed looking through Greg Lawler’s pictures again. Seems like a lifetime ago, but if you’ve joined us on the journey more recently, I’ve put a thumbnail on the right column that can take you to them. They’re too special to get buried in the archives. Thanks again, Greg!
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.
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.
I don’t think five hours of sleep ever felt as good as the ones we got last night. After checking on Rudy at midnight, we came back to the room and sat on the bed for a couple of minutes and the next thing we knew it was 5am.
Aside from the circumstances of the last few days making sleep scarce, I think the main reason I was able to sleep is the fact that there are such skilled people whose eyes never leave Rudy. That chokes me up about as much as seeing him there in the ICU—there are people I’ve never met before who work day and night attentive to details that I don’t even know to look for.
Since the postings on the blog are a mainly quick bursts giving the vital details of some rather unexpected days, I thought I’d give a more complete account.
Tuesday evening, I felt done at 9pm decided to get in bed much earlier than typically of late. I see this as providence because at 3:15 Trish shook me awake and asked for help as she felt her water was starting to leak. I called the high risk OB at UCLA and he recommended we go to Cottage in Santa Barbara to have them verify this and monitor the heart before a likely transport. We both scrambled around the house and called a friend to come stay with the kids, all the while feeling a bit confounded as, even though the journey thusfar is all about things unexpected, we still cling to some odd notion of planning and scheduling. We’ve been working on the assumption that our life would be disrupted starting mid October and the weeks up until then would allow us to tie things up properly. I’m betting Rudy will be the kind of kid who wears his pants backward just because it’s different from the way everyone else would do it.
Cottage confirmed that the water had broken but since contractions hadn’t started and the fetal heartbeat looked fine, they arranged for an ambulance to take Trish to LA. We decided I would stop by the house and drive myself so we could have a car down here (which turned out to be brilliant as it hasn’t moved since we got here and is racking up tickets in the Med Center garage). I was able to see the kids quickly before they headed off to school and pack up a few things. Actually, I should clarify that it was MY stuff that needed to be packed—Trish has had a staging area ready in the corner of our room since sometime in August.
Trish’s ride to LA went quickly as they did turn on lights and siren when they needed to in the morning rush hour. I, on the other hand, had to contend with LA traffic and ended up making the decision to go PCH after reports of a major accident in the valley. Driving next to the ocean was good for me considering the circumstances, though I was probably on the phone more often than not. At 10:45, Trish called and said that since her arrival at 8:30, the doctors had decided they would move the delivery along. There was the possibility of keeping him in utero longer as being larger and healthier might give him a better chance in surgery, but with that comes an increased risk of infection, which would work against this. As she was at 36 weeks and Rudy was estimated at over six pounds, the Drs. consulted and decided that delivery was the safer option.
Courtney was one of the first angels that took care of us. Admittedly, my first thought when I arrived at the delivery room was how great it was that it was “Take Your Daughter to Work” Day at the hospital, and that sooner or later her mother, the real nurse, would make her appearance. But no, this woman blessed with looks that would likely make her a lock for queen of any Junior Prom was running the show. Wow. Attentive, knowledgeable, highly competent and pleasant the whole time. Over the course of the day, our rapport grew to a point where I kiddingly made mention to her colleague of how great it was to be Courtney’s first patients ever, to which Courtney matter-of-factly responded, “You might not be as far off as you think.” I told her she could tell me the truth later, but it doesn’t really matter. She’s a pro who made the right career choice.
We were glad that our friends, Bob and Kathy, couldn’t stay away and were with us for most of the day (Kathy all the way through delivery who had the presence of mind to take most of the pictures we’ve posted). They regularly upped Trish’s Pitosin until things started to get uncomfortable around 3pm and then really intense for the last hour. Activity started to build in the delivery room as Dr. Rachel, the attending physician started to call the shots. I’ve since been amazed at how these well-trained people remain very measured during the most intense times; going about their business in a manner that does little to increase the panic. As they had told us there would be a large number of people in the delivery room when the baby came, I started to wonder why they weren’t there and if they were all going to make it on time, but Rachel was in control and every now and again instructed Courtney to make the necessary pages. Seemingly just at the right time the right people entered the room and joined in the activity—Dr. Lu, the High-Risk OB, interns, nurses and the Neonatal Intensive Care Team. No one stood around waiting, but just quietly kept busy.
Trish was heroic and it wasn’t too long before Rudy made his appearance. He squirmed around quietly for a few moments and then started to holler. As they had briefed us, the NICU team took him right away in their corner and did their once-over, with him protesting the whole time. I hovered between Trish and Rudy’s table and my spirits lifted when I saw them swaddling him up instead of making preparations to move him out. They were clear ahead of time that being able to hold him was not something they could promise, so it was pretty emotional when they brought him over to Trish so she could hold him for about 2 minutes. He rested there quietly and opened up his eyes and looked right at Trish. We knew that once they took him away those eyes would close and holding him would not be possible for the next few weeks. So those pictures and those brief moments are precious to us.
We were able to say a quick prayer over him and tell him we loved him before the team had to take him off. The team let me trail them into the NICU so I could see where they were taking him (Pod 3, Bed 9—I hear it’s a good one) before I had to excuse myself. While the OB team attended to Trish, I tried to figure out how to send the picture from the cell phone out by e-mail and before too long was listening to the Blackberry hum.
They prepared us for Rudy to be getting set up in the NICU for about three hours. It turned out to be more than four, but we weren’t particularly nervous as we were still coming down from the birth process and getting Trish settled into a maternity room. As they finished, different doctors came in and gave their report. A cardiologist finished her echocardiogram and confirmed the HLHS diagnosis, but said that none of the major secondary complications (that really increase the risk) could be seen. Dr. Devaskar, the NICU Chief, reported that the vital signs were good and that the team was making good progress setting up catheters, IVs, etc. He said Rudy was very vigorous and screamed quite a bit during the process (which made it easy to determine that his lungs were completely formed). Dr. Reemtsen, the surgeon, came by and was very upbeat and congratulatory. He said we make good-looking babies and said he was very pleased with the birth weight of 6.5 lbs (less than 6 increases the risk factor significantly). He’s scheduling the surgery for Monday morning right within the optimal 4-6 day window. They don’t like to operate too soon as it gives the baby time to settle (layman’s terms), but if need be they will go in more quickly if they feel like it’s a critical situation. So praise God they don’t see anything that would necessitate this.
After about four hours of waiting, we couldn’t take it anymore and wandered down to the NICU, thinking maybe they forgot to call us, but the two attending physicians on the floor were still working to place the catheters in Rudy’s navel. They were understanding and pleasant and, as we’ve come to see from most people around here, recognized us as the parents, stopped to talk and gave us a brief update before assuring us it would only be a bit longer. They were right, and 30 minutes later we got to go in and see him.
Even with all the tubes, hoses, blinking and beeping, he was absolutely beautiful. He lay there peacefully with his chest moving up and down regularly thanks to the ventilator, long skinny arms at his sides and a big mass of dark hair. His nurse, Dara, and her assistant, Lindsay, hovered quietly around him watching all the screens, arranging tubes and attending to all kinds of details. For the rest of the night, we were in the maternity room exhausted, but with too much adrenaline to sleep. Every couple of hours I would get up and go into the ward just to see him for a few minutes. Around 3am, Lindsay gave him his first bath and he looked even more handsome with his hair all combed.
Around 9am Thursday, I went to check on him and got a bit of a scare as I came upon the pod and saw about 12 people around him. I was quickly noticed and told that Rudy was being moved to the CTICU (Cardio Thoracic ICU), something we had been told was going to happen prior to surgery but a bit sooner than we expected. Dr. Reemtsen said he wanted Rudy there so that they could monitor him closely leading up to surgery. So I followed the transport as they moved from one unit to the next. It’s a unique sight to watch a dozen people moving this small baby surrounded by carts of equipment. I’d seen these kind of processions before in the last couple of days, but this time it was my kid. A nurse escort in front and in the rear makes eye contact with everyone in the hallway and in response to a clear hand gesture they pull over and stand against the wall. There are looks of empathy and understanding from parents who I suspect have made the walk I’m making and looks of compassionate distress from those they pray they’ll never have to. I make the random observation to myself that there’s not a seam anywhere on this floor that would jostle the precious cargo as we move from one hallway into the next. We move in slow and quiet precision—everyone knows their role and watches their part. When moments of concern arise, voices aren’t raised but very direct and measured instructions given. No excuses, no joking, no small talk. And it’s all focused on my son. One of many times a day that tears well up. God bless these people and what they do every day.
The NICU is excellent care in a cozy package; a kind of community feel as four babies are together in a pod with nurses working together from a shared table in the middle, holding babies in rockers in the soft light. The CTICU is a place of precision and focused attention. Rudy has a room bigger than any he’ll ever have in our house with wide doors and a big glass front. Big arms come down from the ceiling where all the equipment gets arrayed symmetrically, the tubes and lines are all ordered together and displays are prominent so that numbers and electronic waves can be scrutinized. The place is well lit when they need it to be without a shadow anywhere.
The next set of heroes goes to work here, Gina during the day and Jamie at night as our first dedicated nurses. They chart from a computer on counter just outside where the big window lets them see everything. More often than not, they’re out of their chair and in there taking care of something. Dr. Federman (clearly expecting her own baby) and Dr. Reardon keep an eye on everything during their respective day and night shifts. They go about fine-tuning things constantly to keep everything in balance. I compare it to tuning a Ferrari—they watch carefully and keep adjusting medications, breathing, blood pressure and oxygen in the blood. The last two days, we’ve been stopping by every couple hours while getting Trish ready to leave the hospital—I have to remind myself every now and again that she just delivered a baby.
In the midst of all our activity, Rudy lays there serenely in the middle of it all. He’s being kept alive right now by a drug called Prostoglandin which prevents the duct that joins the right and left sides of the fetal heart from closing as it usually would in the first days of life. If it did, the fact that the left side of his heart is non-functional would mean no blood could flow to his arteries. He’s been chemically paralyzed so that he can’t move around and disrupt things. The idea is to take all of the other muscles out of action so that the team can focus on his inner organs and what they’re doing. He’s on a ventilator to slow his breathing down so that the team can have very precise control over the oxygen saturation in his blood. The major balance is trying to keep the blood distributed around the body, so they are trying to keep a balance between his blood pressure and his oxygen saturation as this indicates the extent that blood is making it to the lungs and the rest of the body. That’s been the major concern, but it’s not beyond the scope of what they expect.
This afternoon, we met with Dr. Reemtsen for a briefing on the surgery. He did let on that there was some concern about how Rudy was stabilizing early on, but now he felt like Rudy was strong and looking good for surgery. He went into detail with pictures and made sketches of what he would be doing and humored all of our questions. He would place Rudy among the most favorable success rates (about 15% mortality) as he doesn’t see any of about four major issues that would cause him to be more concerned. There are still many variables involved, but that’s the way it looks now. I probably should reserve comment until after the surgery, but I’m so grateful to be in this man’s care. Clearly a gifted man with much to do, but never rushed when he’s with us.
So now, it’s time to get some rest. Trish was discharged from the hospital and we’re moved into the guest house just up the street from the hospital. We’re headed home to Santa Barbara tomorrow to get a few things in order as we weren’t planning for such a quick departure and also to attend the Rescue Mission’s annual benefit. As we’ve felt such love and support from the community there during these days, it will be good to be together. The CTICU team strongly encouraged us to get away while we can. Rudy is in good hands and things will get more intense from hereon in.
Thanks for praying and walking with us. Sorry for the long post, but hopefully I’ve given more of the details people have said they were eager to hear.
Trish’s water broke and we came to Cottage at 4am. We are going to be ambulanced to UCLA shortly. No active contractions at this point so the team in LA will assess and decide whether to deliver or take steps to hold off.
Trish is well. Just anxious. Rudy seems to like doing things with his own flair.
I’m fairly certain my big sister Andrea desires to meet every person in the world and subsequently remain in contact with them. Not sure how close she is to fulfilling her dream, but I am amazed at her ability to maintain relationships over time and distance. To this day, her closest circle of friends includes people she went to elementary school with even though no one lives anywhere near the town we grew up.
I remember one of her best friends, Lisa, who I think she met in nursery school. I can remember tumbling around the back seat of the car in the cul-de-sac at dusk outside Lisa’s house as Mom tooted the horn to get the girls’ attention. The front door would open with wave of acknowledgement and then we would watch for heads moving around in the windows as Andi gathered up her stuff. Being that there was usually an important conversation to finish, I can remember Lisa walking her out to the car just to squeeze in a bit more before the inevitable “Call me’s” were exchanged. It was 35 years ago, but I can picture Lisa and Andi in their first communion dresses and maybe even in Brownie uniforms. I remember tagging along with them to high school football games and them posing for prom pictures at our house with dates in brown and powder-blue tuxedos.
Given the fact that I lost contact with most of my elementary school classmates before I finished my sophomore year in high school, I marvel at the fact that Andi and Lisa have not only kept in touch, but remained close. Lisa’s married and living in Los Angeles so we’ve had passing contact over the years whenever Andrea comes to town; the most recent being just days before Rudy’s diagnosis. I imagine a couple things must have changed over the years, but she still looks remarkably the same and, to my ear, the timbre of her voice sounds just the same as it did back in New Jersey. Now this relationship is one of those evidences of God’s grace because Lisa is a nurse at the UCLA Medical Center.
Part of surviving a severe diagnosis seems to lie in making human contact within an involved medical institution. We’ve learned we need to become known to people so we can advocate for good care, but on an emotional level it as much for the comfort of making friends that remind us that we are not interacting with a “Medical Center”, but with people who have incredible expertise and incredible concern for Rudy. So early into this, as I was still navigating my way through referrals and clerical channels, I took the step of e-mailing Lisa and she put us in touch with her friend Joyce who has worked in the NICU for 31 years. In just a couple of e-mails, Joyce has provided a very comforting perspective on UCLA and the team there. She even told us that she would request to be Rudy’s nurse when the time comes. The waiting game we’re in right now during these weeks can become wearisome, but it feels good to say that “Joyce” will be watching out for Rudy instead of some nameless NICU staff. Can’t wait to meet her in person…
So thanks, Andi! If you ever need money for stamps or your phone bill let me know because I just don’t know when another one of your friends will prove helpful to me. And thanks, Lisa, for being one of an emerging group of caring people at UCLA. While I don’t think I’ll ever be glad for Rudy’s circumstances, within them there are already such evidences of God’s grace to us. I think clinging to those is what will get us through.