Homage to a Hero: Dr. Robert Kelly

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.

I Got MY Turn!

While my back left me a bit worse for the wear, I made the drive down here in pretty good shape and got back to the familiar surroundings of the CTICU. Great to see my wife and Rudy after the long hiatus.

I’ll skip right to the high point as nurses Aliza and Amy were very excited to give me my chance to hold Rudy. That didn’t come until after Trish left and some of his numbers got ironed out after a transfusion and a fever that needed to break. Really, really cool! Not to bemoan my lot, but in the delivery room there was only time for Rudy to rest on Trish’s chest for a few minutes before the neonatal team took him–so even with all maneuvering around tubes and wires, it was some of the best 45 minutes I can remember to hold him and let him look up at me past his chubby cheeks. Just like with Trish, he got nice and calm and I got to run my fingers all the way through his hair and feel his soft back pressing up against my hand with each breath. I’ve got pictures, but no cable–so we’ll have to post them next time Trish has the camera. She got to go first, but if all goes well I may get additional chances before the weekend is up as this could be a daily thing.

I had been prepared for Rudy’s puffy appearance from the TPN and steroids and just about every other person who comes in here assures us this will go away. He does look he’s doing that “even my dog is chubby” routine from elementary school. The docs are pleased that, since the chest tube came out on Wednesday, they did not have to replace it Thursday AM as they anticipated. So far the pleural effusions aren’t there–but Rudy’s been known to hold off a few days before on this kind of thing. The chest Xray this morning didn’t show much fluid either so, in addition to keeping the medications going, they are limiting his fluids as much as they can–the less fluid going in his body to start with, the less can accumulate on his chest. So we’re praying guardedly and fully content to let Rudy make his own slow progress, but it would be great to see this chylothorax go away without there needing to be any other chest tubes placed for drainage. Only then can we look at feeding and breathing on his own.

In the brief time Trish and I were together today (she looked hot, by the way), we did have a meeting with Dr. David Feinberg, CEO of the Medical Center. He had introduced himself to Trish a couple of weeks ago as he regularly makes walks through the hospital to meet patients and families and wanted to hear more abour experience and any feedback we had. So we had a nice 45 minute chat where we were able to both share our high regard for the team of people caring for Rudy and also speak to some of the things he wanted to hear about improvements they might be able to make in assisting families like ours. Always places to improve, but impressive institutions have impressive leadership–many thanks, Dr. Feinberg!

As upbeat as today was, I can’t end this post without sharing one of those simultaneous contrasts that make for such a loaded experience here in the CTICU. Right around the time I was getting the chance to hold Rudy, I noticed “the vibe” descend on the unit. It’s something that you might not pick up on if you haven’t spent weeks here, but all eyes started to focus the room next door–the one with the new little girl who we also suspect was an HLHS patient. Staff began to enter and exit frequently. Nurses covered for each other in adjoining rooms so the one there could have extra assistance. I could picture the focused intensity of the doctors in the room but all I saw were the others who stood outside with expressions very different from the lightness that befits a late Friday afternoon. Equipment and carts were rolled in–the brisk cadences sometimes evolving into running steps. And then later in the hour it became quiet…the staff carefully wheeled back equipment and doctors walked away slowly saying little. Professionals all, but some sure looked like they were going back about business with moist eyes. The parents I never got to introduce myself to walked away with tears streaming from theirs with only a small collection of belongings in a pink hospital tub. The drapes in the room were drawn when I left for dinner and, when I got back it was all too clean and empty. There’s rightfully much attention paid to patient confidentiality here but even without that, I dare not ask. Is there any possible reason they could have transferred her down to the NICU? This soon after a Norwood? Prep for a transfer doesn’t look like that. Our burden may be one of indefinite waiting, but I’ll readily assume it this weekend in light of what I fear others are having to endure.

This is indeed a savage monster. Today’s simple joy is all the more precious when I realize how fortunate we are even for this. Thanks for walking with Rudy in his fight.

Hail, Cesar!

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.

All hail, Cesar—our conquering hero!

How come we never see Cesar and Batman at the same time?

The Plan for today–Surgery

Last night I asked that there would be clarity this morning surrounding the course of action we need to take. We have that, because the 3AM chest Xray showed an a great deal of fluid on Rudy’s right side, so all parties agree that we’ve given more than enough time for the chylothorax to clear with medication and it’s time to fix the problem surgically. I wish we would have been able to get past this without having to do another operation, but compared to the one he already had, this is very minor. They’ll come in through his side and then tie off the thoracic duct so no more lymphatic fluid will come into the chest cavity.

Rudy is an “add-on” case on the OR schedule so it’s not certain when we’ll get called into surgery. They’ll make sure it happens today, but it will be in between or after the major cases. So, probably not before noon, but some time before 6pm. Stay tuned and I’ll keep you posted when I know anything.

On other happenings around the unit. We were excited for Rick and Nicole as Cody got to go home (but my enthusiasm comes nowhere near Cody’s whose been here for about a month for brain surgery). I feel genuinely happy for families as they get discharged, though I always sense an awkwardness from the parents–almost a guilt that they’re abandoning us. I’m certain I’ll feel the same when it’s our time and will struggle to contain my celebration until we’re far away from here. But regardless of our own difficulties, it’s no fun to watch someone else have to go through it and it sure makes me grateful when people can put this place behind them. I hope there was lots of happy noise at Cody’s house last night–and that it won’t stop for some time!

Logan moved across the unit over to Cody’s old room on the PICU side late yesterday afternoon. Pretty nice digs–a built-in couch, cabinets and a private bath, but more importantly it means that he doesn’t need the high-tech CTICU gear anymore. Be encouraged, Brett and Raime, you’re one step closer!

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.

Seeking the Good in Suffering

The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.

C.S. Lewis The Problem of Pain

In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.

I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.

The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.

In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.

As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.

Rudy’s Day of Rest

Today is one of those gorgeous days in LA—in the 70s with a refreshing autumn wind. I had to leave the hospital as I suddenly realized I was driving in an uninsured vehicle. I bought a new truck, sold the old one and was in process of doing all the transfers when Rudy decided to come. It just struck me last night that I never bothered to inform my insurance company of this, so this afternoon, once I remembered where I parked, I had to go back and retrieve the registration to give my agent everything she needed. This rather mundane chore gave me a chance to be outside the hospital during daylight for a bit and it was so nice I took a long way back through campus and the botanical garden just to enjoy it for a bit.

Back here in the room, things are peaceful. While Rudy has flown through several of the milestones to date, his progress seems to have slowed a bit today. Yesterday there was talk of removing his breathing tube, but today’s chest X-ray showed a significant amount of fluid in his lungs and around his midsection so they’d like to see that drain. This isn’t really a setback just a matter of a bit more time. He’s sleeping a lot today and even though it’s been quite a week, looking at him we’re reminded that he is still in a very delicate state. Even though we’ve gotten used to being in this place, it’s still the intensive care unit and the patients are by definition in very acute situations. Please keep praying for fluid to leave his body (feel free to use the terminology you think God would find most appropriate, but basically he needs to keep peeing).

He’s completely off the paralytics now, so while he might still look motionless to most eyes, as we’ve been closely focused on him for the last week we see all the little twitches and involuntary movements that weren’t there before. He’s very sleepy today and has opened his eyes lazily a few times today, but not for long. Maybe that’s because we get up in his face any time we see them open and he just wants some space. A couple of times he opened and closed his hands a bit and wiggled his forearms on the pillows. If I put my pinky between them and the pillow he’ll fumble for a bit and try to hold on with his long little fingers. That’s cool.

The one thing I notice missing from the room today is the cooler with the emergency blood supply that was standing in the corner. Looks just like one of those Colemans you take on a picnic except for the bold type telling you what’s in there. Though the staff usually calls for individual delivery of blood when they need to do a transfusion, they do keep a supply right next to an acute patient’s bed they can get to right away if there’s an emergency. Even though no major equipment was disconnected today, we’ll read it as a positive step that team felt it was safe to remove the blood cooler.

I don’t think I’ve mentioned that Rudy was actually the first pediatric CTICU patient on this ward. This hospital is only a few months old and it takes awhile to get all the specific licensing done. Up until now pediatric cardio-thoracic cases had to go upstairs with the adult heart patients. The plan was to eventually have a wing of beds for CT cases with dedicated nurses within the pediatric ICU so that this whole section could be for kids and their families. Even last Friday, Dr. Reemtsen told us we would be upstairs, but some things seemingly fell together and on Monday we found out that we would be staying here. No difference at all in the care, but it does make for a unique community of families in similar circumstances. It seems that most of the patients have come and gone since we’ve been here, but the long-term cases tend to find each other. Two doors down from us there’s another Santa Barbara family with a two-month old that had to be airlifted here on Monday and undergo several hours of surgery yesterday. So we check in with each other, commiserate and swap war stories we wish we didn’t have to claim as our own.

We also had to say good bye to our new friends Leilani and her sister-in-law Lauri today. We were fortunate enough to be seated next to each other in the surgery waiting room on Monday and got to experience the surreal adventure together. As if sitting there in angst as our little baby was having this risky surgery wasn’t enough, we endured the irritation of neighbors on their cell phones and blessed volunteers who mispronounced just about every name they had to call to the desk (so three families could be alarmed at a time until it was finally straightened out which one was being summoned). Throw in an active little toddler pulling the fire alarm and I was about ready for my own heart surgery. Through the morning, our pleasant hellos progressed to exchanged smirks, raised eyebrows and nervous laughter as we tried to hold the neuroses at bay. We finally got to introducing ourselves (so at least we’d have that behind us when Allen Funt came out from behind the planter to point out the Candid Camera) and we discovered that Leilani’s husband and Rudy were on bypass at the same time. We continued our visit over lunch next door and managed to keep in touch through chance meetings in the hospital lobby. We were so glad to hear that they were discharged this morning. Good health to you, Mike! God bless you all and hope you return to the ocean soon. If you ever get to the anchorage off Goleta, dinner at the Beachside Grill’s on us!

Tomorrow, the kids are coming to stay the night. After some of the initial bumps, they’ve been troopers and have had a good week. Hopefully, Rudy is resting up for his day with them. We’re excited to see them, so in case updates are few this weekend, you’ll know it’s cuz we’re having fun!

A Quiet Day

I’ve been enjoying a quiet morning here sitting with Rudy. Actually it’s now already afternoon—time kind of mashes together during this process. Yesterday evening I crashed. I think the unique patterns of sleep and stress caught up with me a bit. So, I stretched out on the chair bed at the back of Rudy’s room and checked out. Even with all the lights on and people coming regularly and having discussions about his condition, there’s a rhythmic hum from all the equipment that fades it all together and makes for a bit of sensory deprivation.

Rudy progressed well in the wake of his chest closure yesterday morning and the team has continued the ongoing balancing process making sure that blood is getting evenly distributed throughout the body, that the blood gases stay in check, that heart and breath rates are where they should be, that liquids are draining properly…so many details monitored by so many gauges and switches. I think I count ten different lines going into his body and two coming out. Throw in the harness of breathing tubes and the various wires to monitor heart rate, temperatures and oxygen saturation and it’s a very involved rigging. I’ve noticed the nurses regularly give attention to this, rerouting lines here and there and relabeling all the lines at both ends to make sure there’s no question what’s what.

This morning when we came in they had removed the headband that was monitoring fluid levels in his brain so I’m looking at a nice broad expanse of forehead. It’s got a nice warm color, but I hope there’s a chance he’ll get a bit of a wash today as I can see some tape residue from the band and he looks a bit like a middle-aged man whose comb-over is beyond help at the end of a humid day. The team has said a few times that “he’s negative” which is actually positive (we’ve learned to not get immediately panicked by anything we hear). They track all of the fluid going into his body through all these tubes and then subtract how much is coming out. If the number is negative, that’s good as it means the kidneys and other functions are performing and he isn’t retaining liquid anywhere, though looking at his little body with his long skinny arms and legs don’t give much evidence of places he would store it.

He needed a transfusion this morning as there was concern about where his blood levels were headed. His oxygen saturation was getting down into the low 70s so among other measures they increased his blood volume. The green number reads in the upper 80s now so that’s a good thing. This falls again among the many things the team does proactively to make sure balance is maintained and we continue to be grateful that his condition hasn’t taken a turn such that they need to chase after something.

Rudy’s opening his eyes wide and is looking around quite a bit today when he isn’t sleeping and every now and again starts to gnaw and try to suck on the breathing tube. They’ve got the ventilator turned down to 16 breaths per minute, but he’s getting around 45 which means that he’s breathing on his own over the ventilator. They may try to remove the ventilator as early as tomorrow, but I have to keep reminding myself that, as encouraging as progress is, this isn’t a race of any kind. Just now they rolled Rudy’s head right up and now his eyes are wide open and he’s really putting those eyes through their paces—we’ll post the picture shortly.

We just took a quick lunch break and while we were gone the number of tubes was decreased by one as they took out the chest tube that was draining fluid from his incision. Nurse Cheryl gave him some happy medicine and he’s sleeping comfortably now. So now there’s one less piece of equipment at the foot of the bed. Over the last several days, I’ve had good time to contemplate the Oasis Dry Suction Infant/Pediatric Chest Drain manufactured by the Atrium Corporation. The team would regularly come in to check the tube and how much fluid was going into the reservoir over time. Eventually the flow lessened to the point where it’s not necessary anymore, so that’s the milestone for the day. In my time of contemplation, it did strike me as odd that in addition to all the medical language and the measurement gauge on the chest drain was a prominent cartoon of two polar bears fishing on a small tropical islet complete with coconut palm. Not sure what they have to do with the device’s purpose or if some marketing team testing graphics decided that this would be a more saleable design than bunny rabbits or balloons. I was intrigued enough to ask Dr. Harrison (the attending) when he came by yesterday. He admitted that in all his years here he has never noticed the fishing bears on the chest pump, but felt that they looked more like regular brown bears. Totally unhelpful. Why are they white then? Why would they be in tropical latitudes? Why would they be fishing with bamboo poles and bobbers instead of their paws? For the first time I saw a member of the crack UCLA team stumped and I suspect he’ll think twice before offering his usual “Do you have any questions?” at the conclusion of his visits.

So, we’re grateful for the peace of this day. The kids check in regularly by phone and we are so grateful for Oma and Opa as well as the La Patera school community embracing them. We’re making plans for them to come visit this weekend and stay the night. Trish is on the other side of Rudy’s bed addressing birth announcements and I would suspect will have them in the mail by the weekend. After arriving in the room this morning, she divulged to me that she wished she brought along her Swiffer as the smudges on the floor are really bugging her. I’m wondering if a stop on the Psychiatric Unit downstairs might be in order…

Torn Between Three Loves…

We slept last night like we haven’t in awhile. We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school. I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.

Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case. Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable. After the way last night ended with Livy begging us to come home, it added another place to those we wish to be: with Rudy, with our other kids, and now in Kansas with Trish’s family. Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.

The hospital staff quickly became aware and though we got quite a bit of empathy and kindness. It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them? It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown. You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what. There are powerful emotions on this journey. Trying to stuff them could likely make you crazy.

In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff. Maggie the Cardiology Fellow likes to give a “Rud-ee! Rud-ee! Rud-ee!” cheer when she comes in to see him. Everybody thinks he’s really handsome and the medical folks say he’s a model patient. His vital signs continue to be perfect and every set of labs is progress in the right direction. The big concern today continued to be that he would start peeing regularly. Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk. The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing). Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door. Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.

We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold. He’s got them on now and we’re torn as to whether his feet are cuter with them or without them. They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue. Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case. Especially now that he’s peeing, he looks leaner than he did in the birth pictures. Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down. Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA. It’s not as bad as one might think, though Trish hasn’t been curious enough to look. There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.

The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit. When we come close, hold his forehead and start talking they slowly open up to about halfway. If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue. I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff. It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.

It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night. Monina is tonight’s angel so we’ll rest easy. Thanks, Jesus, for guiding our little boy today. As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.

Here’s the details

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.