A big part of what makes life with a condition such as HLHS bearable are the people who come alongside. There are plenty of frustrations, disappointment and tears–let’s face it, the whole circumstance is regrettable–but, within these challenging circumstances one has to keep focused on the blessings and touches of grace. There are so many people who have lightened the load and, sometimes even with just the smallest act, have made life brighter and reaffirmed to us that we aren’t alone in this. I don’t think we could ever mention all of you, but there’s two that struck me recently.
This handsome guy is Mike Champion, our insurance guy. His life’s work revolves around Risk Adjustment Factors, Provider Networks, deductibles and disclaimers…and somehow he’s not only sociable, but upbeat and positive most every time I see him. Part of dealing with a critical health matter is dealing with insurance, billing and the like. That can be stressful and unpleasant, but Trish and I have often voiced our gratitude for the medical coverage we do have. I could never have foreseen our personal circumstances back when I was working with Mike to set up our employee benefits plan. As we’ve since watched enough families not only have to deal with the realities of having a sick child but also have to contend with incredible financial stress, we’re so grateful for Mike’s ability to think ahead and make sure we had the right things in place. He and his able sidekick, Betty, have also proven to be very effective advocates for the times when we have one of those statements that just won’t get straightened out. Mike was able to tear himself away from the spreadsheets he loves so much recently to come over and meet Rudy. So grateful for heros and friends who do so much behind the scenes.
Next up, there’s our neighbor, Janelle, who also happens to be a hospice nurse. Whether she likes it or not, she’s one of our home health care consultants. Recently, she also proved very adept at resource procurement. You’ll recall my post a few months back about the innovation of Rolf’s Wonder Humidifier. You’ll recall that my quest for invention was driven largely by an aversion of having to deal with our home health provider (crApria–forgive me) as requests like this involve inordinate amounts of time, phone trees, faxes they “never got”, and shipments of the wrong thing.
Well, Janelle was taking care of a patient recently when a crApria driver showed up with a delivery of respiratory items. On behalf of Rudy, she displayed her trademark charm and persistence and went to work on the driver. Turns out he had the bubble humidifier we had been longing for on his truck–(who’d a thunk?–those huge trucks they drive around in are actually stocked with commonly required home medical supplies.) We’re not asking too many questions about how the usual demands for paperwork were bypassed, but I’m keeping Janelle’s number handy. Maybe she’s good at getting tables at famous restaurants or prime seats at sporting events.
I confess there’s some pride that’s keeping me from taking Rolf’s Wonder Humidifier offline, but I guess it’s good to have the actual part we’re supposed to have on hand. Thanks, Janelle!
I failed at masking my disbelief when, at our last appointment, Dr. Harake reported that Dr. Dan was coming to Santa Barbara to run in a road race. Don’t get me wrong–he’s a gifted and personable cardiologist who invents cutting edge gadgets to help little kids in the fight–but the memory of watching him chomp on a bag of Doritos during 9am rounds didn’t exactly convey the image of “runner”.
As I suspected that Dr. Harake would not be able to resist passing on my initial shock, I was given pause when I received an e-mail from Dan late in the weekend. Instead of taking umbrage, his devotion to Rudy was very evident.
Thanks to you and Rudy, I had a dominant effort in the clydesdale (>200 lbs) division of the SB Half Marathon. I finished in under 1:56 min with a staggering 8:50 min/mi pace. Bilal told me that you were “surprised” to hear that I would attempt such a thing so I decided immediately to dedicate my race effort to Rudy. When I almost suffered a myocardial infarction at mile 9 of 13, I just started saying to myself “Rudy never quits and Dr Dan never quits” – this made the last 4 miles possible!! Tell Rudy Thanks! I will send him my medal!!
P.S. see number 583 and please note that there were 1705 runners thus I was not last! Also note efforts by Jenn Levi (244 overall) and Noel Reemtsen (much faster than me-#263)
Once again, I am moved by the individuals we’ve met on this journey and grateful for them. Good show, Dr. Dan, and thanks for being one of Rudy’s heros!
As much fun as it is to have Rudy home, there is one thing about the ICU we miss: the incredible people who work there. A diagnosis of HLHS will never be anything but a nightmare, but given this is our circumstance we are so grateful to find ourselves in the care of such a company of people. Rudy was in the hospital for six months and he’ll be back for more, but Trish and I will never fail to be moved by the fact that there are people of skill and expertise who do what we can’t–from complex surgeries, to watching for things we would never even know to look for, to sitting with him all night while we get some sleep.
Because we don’t want to forget any of them, and we want Rudy to someday see how his life was only possible because of scores of people who came around him, I’ve compiled a slideshow tribute (OK, I started to, but needed Greg Lawler’s genius to actually complete it). If the names and faces aren’t recognizeable to you, be moved by the sheer number of them. It’s very humbling to us how many people did what they did so that Rudy could have a chance, and we also regret that we didn’t get pictures of everyone. It figures that we somehow missed some of the regulars, so our apologies. As the file was too big to host on our blog, you’ll have to go back to Greg’s site and find the tribute video below Greg’s discharge show.
From Rudy’s new room, I can look across the nurses’ station to his old one and it brings back memories of those first days when this whole place was so unfamiliar.I remember being overwhelmed by mysterious pieces of equipment being wheeled around.I remember trying to divine the purpose of many procedures I had never seen before.I remember the parade of people coming in, introducing themselves, their specialty and then examining Rudy.The raw intensity was such that most of the names escaped me well before their bearer even left the room.
A few repeated faces started to distinguish themselves amidst the blur of those first few days.Rudy’s condition was very tenuous at that point and there was lots of attention being paid to him and all the foreign numbers up on the monitors.The doctor with lively ties seemed to be in the room quite a bit, watching carefully.Like everyone else, he watched the numbers tick by, but gave equal amounts of time to watching Rudy—noting his skin tone, the flare of his nostrils and the cadence with which his chest would rise and fall.Even when he was dealing with other kids in the unit, most of his passes by the room included a quick scan and status check.
It was only the most disciplined restraint that kept us from constantly cornering every doctor for detailed explanations on what they were doing and seeing.There was an instinctive sense that hovering over the staff would interrupt their work and divert the attention that needed to be paid to Rudy.But even if he couldn’t give a running commentary, the doctor with the ties always seemed to stop at just the right time to give us an update on what was going on.
Dr. Henderson?Dr. Haroldson?Doctor Richardson?For some reason it took me quite a few quiet checks with nurses to get straight on the name, but finally I got it that the Doctor with the ties was Rick Harrison.Remembering his name at this point isn’t much of a challenge as Rick is the second intensivist who has done the bulk of the rotations during Rudy’s sojourn here in the ICU.
I’m not sure how one could navigate such a journey as the one we’ve been on without trust in the people we simply need in order for Rudy to have a chance.As I’m continually impressed by the giftedness and knowledge of most every nurse, tech and therapist, I have nothing but awe left for the doctors.In position, but more importantly in competency, Rick is at the top as he brings incredible expertise and clinical experience into the very emotional arena of very sick children and the fretful parents that accompany them.
As much as I’d love to cling to the notion that no one knows my child better than I do, I probably let go of it well before Rudy was born.No one loves him more, but it only takes one visit in rounds to be reminded that there are levels of detail I’ll never understand and questions I wouldn’t even think to ask.For Rudy’s sake, I’m grateful there is expertise that far surpasses our own.I’ve come to see that his treatment rarely involves black-and-white decisions; but an involved sequence of judgment calls requiring knowledgeable coordination of disparate and often intricate steps.We are grateful for the many weeks that Rick, with his measured and seasoned expertise, has played this central position.
A good doctor at this level is deeply knowledgeable, drawing on science and experiences with thousands of patients.An exceptional one also recognizes that each patient is unique and at some point departs from the textbook conventions.We have often heard Rick remind the doctors in rounds that Rudy has his own norms.He is probably more intricately aware of the data than anyone else and would never flippantly dismiss it, but his overall assessment leaves room for common sense and basic observation.As helpful as science is, a skilled clinician knows when it should be trumped by simply looking at whether the patient looks peaceful or distressed.
We never lose sight of the fact that Rudy’s condition has us in a place of dependence and we are so grateful that one of the key people we are leaning on is one we trust so deeply.Trish and I have daily discussions about Rudy’s course of treatment, and more often than not they touch on Rick’s opinion.Rick’s esteem among his colleagues seems to match ours as I can’t recall anyone being offended by the many times we’ve asked if he’s been consulted.It was only in gathering my thoughts to write this that I discovered that Rick wears another hat—as Medical Director for the Mattel Children’s Hospital.As far as we can see, they sure have the right guy in charge.
We place our trust in Rick not only because of his technical competency, but also because of his ability to appropriately straddle clinical distance.This journey is about my kid and I’m a human being going through emotions that I’ve never experienced before as I try to comprehend realities I never dreamed I’d have to face.So, I need guidance from human beings, who never lose sight of the seriousness of the situation or some form of necessary objectivity; but don’t engage without emotion.They hurt with us; are frustrated with us; know the process well enough to identify milestones worth celebrating; and introduce well-timed humor amidst circumstances so intense it would never be expected.In light of this, my most vivid memories of Rick do not center around medical details, but on human interactions:celebrating when Rudy peed enough; overseeing Rudy’s first two extubations; losing more than a couple nights’ sleep at home pondering Rudy’s condition; feeling sad and frustrated with us when we had to go the route of the tracheostomy and feeding tube; and stopping in on an off day to see Rudy and Trish after hearing of the chylous fluid in Rudy’s stomach.
Rick describes himself as “the doctor no one wants to see”; because dealing with him means you have a very sick child.Point taken, but given that I have no choice over the condition Rudy was born with, I can’t tell you how glad for the many times we have seen Rick.
I’ve written of the due diligence we did upon learning of Rudy’s diagnosis in utero. To receive a diagnosis of Hypoplastic Left Heart Syndrome was to find ourselves in a scramble to get conversant in a world we previously knew nothing about. Within a short time, we knew enough to understand the importance of cardiologists and cardio-thoracic surgeons, but beyond that we barely knew what questions to ask. As we started to head in UCLA’s direction, a doctor friend here in Santa Barbara noted that it is a Level 1 Pediatric Trauma Center which means that it has the highest level of resources for dealing with kids in critical circumstances. I didn’t think much of it at the time, figuring it would be a given that UCLA would be among the more advanced hospitals in southern California. But beyond that, I didn’t know there were levels and that they stood for something.
I didn’t know there were doctors known as “Intensivists” who specialize in the care of critically ill patients. While Dr. Reemtsen is the quarterback of the team (Rudy is “his patient”) and he and the cardiologists track him with great care and are involved in every decision, it’s the Intensivists that never leave him. Attending Intensivists take charge for seven days at a time and are supported by Fellows who are present around the clock to keep watchful eyes on patients whose conditions don’t distinguish between waking and sleeping hours.
We’re not sure how rotations and schedules are set, but somehow Dr. Robert Kelly is one of two attendings who have pulled the majority of the shifts while Rudy has been in the CTICU. In a place where the line between life and death is regularly skirted and parents are pitched about in the accompanying throes of emotion, Robert walks calmly and methodically; a man who’s found bedrock and, by virtue of the fact that he’s securely anchored there, can keep a steady course while we flail about.
On a Sunday early on we discovered a mutual love for the New York Giants which led us to discover that, we too, share roots in North Jersey. On the surface, Robert appears a straight arrow. I would suspect he’s always been one except that he attended the Catholic boys’ school my parents always threatened to send me to. Maybe there’s a sinister past we don’t know about that required Benedictine reforming.
Among other things, Robert’s calm demeanor in the CTICU comes from a base of knowledge and competence. A typical morning round at Rudy’s bedside is an introduction to a new language; a flood of terms, numbers and instructions (and I’m only listening to one patient’s worth). Everyone in the huddle tracks along and I try to nod knowingly with my most intelligent expression hoping I’ll remember the big words long enough for Robert to stop by. He understands them well enough to explain them to me and has the patience to do so multiple times if necessary.
Rudy’s situation is complex and patients in his condition do not follow a scripted course of treatment. It is a journey of debate and discovery and Robert is often a central player; secure in what he knows, but welcoming of other opinions; able to draw on a wealth of personal knowledge but also willing to research diligently. It’s navigated best by someone who is able to keep the patient clearly in view and desires to marshal any and all resources and expertise on their behalf. I’ve come to trust that Robert tends to be right most of the time, but love the fact that he cares less about this than Rudy getting what’s right.
Robert seems to be very aware of Rudy’s condition whether he’s on duty or not. More than once I’ve come across him somewhere in the hospital on an off week and it’s clear he stays as current on the charts as if he rounded with the team. It’s not like his “weeks off” from us are devoid of intensity as he spends most of them on duty with the transport team where the next phone call could see him rushing to the helicopter to bring in a child in critical need.
I’m always struck when Robert comes in to see Rudy as it’s a man about my size who fills the doorway. While my hands have been compared to Paleolithic tools, his go very gently over Rudy’s body and navigate deftly around the wounds, wires and tubes. The stethoscope is carefully cleaned to make sure it’s sterile, but also so it’s warmed and doesn’t startle Rudy. As he finishes up the exam, his eyes sweep the room from monitor to monitor and pump to pump. I’ve come to believe that he knows what just about every one of these numbers should be, but such things always bear verification.
It was observed that Robin Hood’s trusted sidekick, Little John, was anything but little. Not noted for the flamboyance of his leader, John’s reputation was that of a “stout, loyal fellow”, so I draw the parallel to Robert for reasons beyond physical stature. As a parent thrust into the world of the CTICU, flamboyance counts for very little, but stoutness and loyalty mean everything. Robert’s steadiness and unwavering commitment to Rudy, and thereby our family, are things we will be forever grateful for.
We were so excited to see the wait for a donor heart come to an end last week for Cesar. As he battles back after his transplant in the room next door, having learned the hard way that In-N-Out and Burger King might not be the best in post-op nutrition, here’s more of his story:
There’s a regular shuffling of the chairs between rooms here in the CTICU.If we find ourselves short, I check through vacant rooms to see what I can find. The nurses tend to be concerned for our comfort and often lead the search for a nice rocker or recliner if we look like we need it.While our stay is approaching a length to where we feel enough ownership over this room that we might repaint it, there’s no dibs on the furniture and if the nurses need it, they have no problem coming for it.
I remember coming in one morning the week before Halloween to find that all of our chairs had been cleaned out.As I set off on my quest, a nurse explained that several family members of the newly arrived patient next door had spent the night and needed lots of chairs.
Introductions between neighbors in the ICU tend to be slow in coming.Most families come in shocked and are so focused on what’s going on with their child that there really isn’t much attention left to be paid to meeting the neighbors.Many kids are only in the unit for 2-3 days until they’re stable enough to be moved to the floor, so it usually takes seeing the same faces for about five days before one gets introduced and acquainted.
For about that long, I noticed a steady stream of people coming and going from the room next door.Walking by, I caught glimpses of the tall kid laid out on the bed with the usual tubes and hoses.Like most patients, he came in here in pretty rough shape but after a few days I noticed his eyes would be open and he’d be holding court with nurses, doctors or the guests that always seemed to be visiting.
Our formal introduction came on Halloween, when Cesar came rolling down the hallway in his full Batman costume pushed by Liz, his older sister, as he wasn’t going to miss out on the festivities.That evening, I think there were close to a dozen people in his room watching videos and playing video games (Cesar came prepared with his own Playstation).While Rudy wouldn’t know Halloween from any other day, we were missing our kids a great deal that night so there was something comforting in seeing family and friends making sure that our neighbor wasn’t going to miss out on a memorable holiday just because he was in the CTICU.We stopped by as we left sometime after 11pm and were met with expressions that said, “What, you’re leaving already?”Cesar declared that there would be pizza arriving shortly, but since he stopped short of an edict, we begged off and got some sleep.
In the days following, Cesar went for walks about twice a day and always made a point of stopping in.We, in turn, stopped by his room a couple times a day.Through this, we learned that Cesar was also born with Hypoplastic Left Heart Syndrome, went through the Norwood operations and then needed a heart transplant at age 12.He was back in the hospital because he was rejecting this heart and was going to need a second transplant.In learning his kinship with our son, Cesar visited Rudy’s bedside, looked him over and with the authority that comes from experience said, “Rudy’s gonna do really well.I just know it.”
I suppose it’s natural to lament one’s own circumstances, but life in the ICU shows us that there are different flavors of agony and I often walk away from conversations feeling deeply for what people have to face and thanking God for what we’ve been spared.For Cesar and his family, the burden was an angst-laden waiting game.On the one hand, they would have as little as five hours notice before surgery; on the other, the wait could be as long as six months for a donor heart to come available.However long it took, Cesar was going to be in the hospital until a match was found.
In order to survive extended stays in the ICU one is wise to learn from the example of others, so we are so grateful for Cesar and his family.Enrique and Maria amaze us in their ability to extend themselves in maintaining work and family.While Santa Ana is within the LA area, there are likely times where traffic makes the drive about as long as the one from Santa Barbara; yet they are here almost every evening, even if it means driving in late after work for just a couple hours to be with their son.His older sisters, Angie and Liz, are blessed with looks and charm that most likely keep their dance cards full, but they’ve taken an inordinate number of shifts at his bedside keeping him company.While we don’t like for Rudy to be alone here, it seems even more pressing for kids who are more cognizant of their surroundings.So I am amazed at the lengths they go to in making sure Cesar has company.
But most moving is Cesar himself, who goes beyond simply having a positive attitude to embodying a defiant joy.He’s quick with a welcoming wave through the window.Even though his walks down the hallway are slow and require a nurse to push his IV stand and keep an eye on all the lines, my attention is diverted to the huge “Crusty the Clown” slippers on his feet that make the whole scene evoke laughter more than pain.As much as he might drag his feet on some of the assignments he’s had, he’s excited about getting back to school.I’m not sure he has the green light from his parents, but he speaks of getting a Husky puppy when he’s back home and is threatening to name it after one of the doctors.
Make no bones about it, the ICU is a scary place where kids and parents are faced with circumstances that are the stuff of nightmares.To be here is to take up a battle position and wage war against the opponent. We take on any sort of demeanor in such a showdown; we can get angry, hostile, fearful or overconfident as we fight against that which scares us.But leave it to a teenager like Cesar to be the most rebellious.He demonstrates the greatest defiance in laughing before the foe, fully aware of it’s might but unwilling to let it steal his joy.
I’m usually not at a loss for words (as this blog would indicate), yet I’ve found it very hard to compose a tribute to the key member of Rudy’s team.There’s a tinge of pathos in saying that my son has the greatest heart surgeon in the world only because it assumes as a given that his condition demands it.I am sure no one here at UCLA would be offended by my saying that I would much rather Rudy have no need of any surgeon; but as that’s not our reality, it’s difficult to express the deep gratitude we have for Dr. Brian Reemtsen.
When we first learned of Rudy’s diagnosis of Hypoplastic Left Heart Syndrome we got several recommendations to seek treatment at Children’s Hospital Los Angeles (CHLA), but we discovered our insurance network was contracted with UCLA.While we were willing to fight to any extent necessary to get Rudy the right care we also realized the wisdom in reserving our energy for the most important battles, so we decided to do some due diligence and investigate UCLA—at least to have some grounds on which to base an appeal.
As I’ve already written, the initial responsiveness of Gary Satou and Dan Levi served as a remarkable introduction to the team at UCLA.Both spoke no ill of CHLA but also laid out what UCLA could offer—most importantly an expert surgeon, Dr. Brian Reemtsen, to do this very intricate surgery.Just months before, Dr. Reemtsen had come from CHLA to build a top-notch Pediatric Cardio-Thoracic Surgery program in the new Mattel Children’s Hospital at UCLA.They had high praise and said that they would speak with Dr. Reemtsen as he would certainly want to consult with us.This willingness was driven home the next day when Susan, his assistant, called to let me know that Drs. Satou and Levi had already spoken to Dr. Reemsten and he instructed her to call immediately to again affirm that he would make time to see us whenever we could get to LA.
Our first meeting with Dr. Reemtsen in September was no let down from the hopes we had built up.He took the time for a very thorough conversation, entertained any and every question and was straightforward about the challenging diagnosis we were confronting. He was empathetic, realistic and hopeful; able to put things into understandable terms and patiently allowed us to digest information and repeated himself if we asked.
We were forewarned of some the personalities we might encounter when dealing with specialists and surgeons who deal with such complicated diagnoses.We were warned that the greater the expertise, the more aloofness one might have to contend with.We were briefed on skilled surgeons who excel in the operating room, but might be less than comforting at bedside (on the rare occasions they make an appearance).I’m not sure what experiences fed these stereotypes, but meeting with Dr. Reemtsen quickly made it clear they didn’t apply here.
I spoke of the very strong recommendations we received for CHLA and Dr. Reemtsen took no offense at this, having nothing bad to say about his former employer and even encouraging us to investigate both options.In making the case for UCLA, he held forth the promise that he would be hands-on involved in Rudy’s care from delivery to discharge.His arrangement here is such that this is his only hospital and practice so he’s here every day and can remain very involved with his cases (contrasted to a specialized surgeon who might have patients in multiple hospitals and only pass through on an occasional basis).He would be by the bed several times a day and constantly interacting with the treatment team in every development and decision. He would be honest about our circumstances, communicate clearly and not give false hope.
It was a very encouraging conversation, at the end of which he pulled out his business card, wrote his e-mail address and cell phone number on the back, and made it clear that we should have no hang-ups about using it for any reason whatsoever.No answering service.No automated phone trees.Straight to him.I never ended up calling it but remember a few worried evenings in my office, as I tried to take in all the unknowns that lay before us, where simply picking up that card and turning it over to look at that number brought a sense of comfort and reassurance.We were in good hands.
At the outset, I don’t think I would have been able to articulate an itemized list of qualities I would want my son’s cardio-thoracic surgeon to have.As Rudy’s heart would be very small and would require very steady hands, I remember checking Dr. Reemtsen’s during that first meeting to make sure all the fingers were there and that they didn’t shake excessively. Overall, I noted no obvious involuntary ticks but did wonder if it would be possible for me to hide in his closet and jump out just to see that he didn’t startle uncontrollably.Other than that I didn’t have any sophisticated rubrics for evaluation.Other doctors spoke highly of him and we wouldn’t expect UCLA to hire anyone with blemishes on their record (but I did check), so the main criteria for us to choose our expert had little to do with an educated analysis of his skills, but simply by how we felt about him.
While arrogance is not an attractive trait, when it comes to choosing a heart surgeon neither is too much humility.You want self-confidence; a person who is well aware of their competencies and does not question them.While the general population strives for well-roundedness, I prefer my heart surgeon to be somewhat out of balance—a bit too dedicated to work, unable to thwart perfectionist drives, never able to make enough time for hobbies, incapable of leaving work on time or stay away on a weekend.Someone who will always remember that he’s dealing with MY baby—and that my world has come to a stop.Someone who realizes that my medical training ended with high school biology, but I’ll be comforted to know relevant information in language I can understand.
I trust the number of interactions with Dr. Reemtsen documented in this blog communicates implicitly what is taking me a number of passes to state explicitly.He is a person that exudes competence; who I suspect doesn’t give much time to things he can’t excel at.He is purposeful and doesn’t give indication that much time in his day gets wasted, but has time to stop and be friendly.He wears a mantel of importance, but carries himself without much fanfare.His attention to his patients knows few bounds as demonstrated by the evening and weekend visits and the late-night phone check-ins I’ve overheard.
If the guy who holds my son’s heart in his hands demanded I call him “Spartacus”, I’d have no problem doing it, yet I love the way he introduces himself as “Brian”.As isolating as life can be here in the CTICU addressing our key source of comfort as “Dr. Reemtsen” would keep him far more distant than we’d like.
I make no pretense that I’m motivated largely by my own self-interest in this whole journey. I want the best outcome.I want Rudy to have the best.But this comes at a cost, and I’d be delusional if I thought I was shouldering more than a fraction of this.In his devotion to our son, Brian has made our burden his (along with so many others here at UCLA) in ways that we never could repay.We’d like to think we know what’s best for our kids and provide everything for them, but this experience has shown our knowledge and competencies to be shockingly finite. So thank you, Brian, for having the expertise and skill we could never muster.
I also realize that others pay a cost for Brian’s round-the-clock devotion to Rudy.On several occasions, we’ve heard Brian speak of the Reemtsen ladies.As their husband’s and father’s commitment to my son undoubtedly makes for absences from them, we are so grateful.May they realize now and in the future the profound hope he brings to families like ours through what he does each day.