Going for the jugular…

It’s been awhile since we were the busy room in the unit.  Unfortunately, that changed today.  Rudy made it through the first of his three hour sprints in the early morning before I even got to his room.  From 11 on, he started to get more and more fussy (with a high heart rate and breathing) and the usual steps to calm him down (holding him, changing positions, suction, rescue doses of sedatives) didn’t change things much over a four-hour span.  While the team worked to eliminate possible causes, things became clear when his temperature spiked and his blood gases indicated he was headed toward acidosis.  The infection we’ve been monitoring in the picc line was now presenting itself as something that needed to be reckoned with.  Remarkable how quickly things can change—the same tests gave no indication of anything being amiss just hours earlier.


Just after 3pm I signed consent forms and left the room so the team could insert a new picc line.  One of the reasons why the team didn’t just pull the line out of his arm right away was the simple fact that they are running out of sites to start lines on Rudy’s little body.  This turned out to be all too true as they started trying to insert into Rudy’s groin.  When that didn’t work, they tried to put a subclavian line in his chest.  Two hours into my exile from the room, I was called asking to give consent for them to go through the neck into the jugular vein if chest insertion wasn’t possible. 


So I set out on what turned out to be five hours of trying to keep myself busy.  There’s a surreal feeling to the times where we have to leave Rudy for a procedure.  If it doesn’t last longer than they say it’s going to it always feels that way.  All I really wanted to do was curl up on a couch somewhere with a quart of Ben and Jerry’s, but I decided to take a walk around campus (OK, I did get an ice cream cone to safely offset any calories I might have burned).  Turned out to be quite a long walk, but most of my exertion was directed toward not checking my phone every 30 seconds.  About the time I thought it would be smart to get an early dinner while I couldn’t be in the room anyway, I got that call about consent to go for Rudy’s jugular.  On hanging up, I found myself in another one of those surreal moments of uncomfortable weirdness—“Yes, go ahead and stick my son in the neck.  Now, do I want Thai or a burrito?”  Pretty good food, but not much enjoyment.


I walked back to the hospital a bit frustrated by how familiar this whole place and routine are.  I know the stains on the sidewalk.  I know it’s around shift change so I headed to the West elevator because the East gets crowded.  I recognize too many of the faces coming in and out of the building.  I saw a couple of nurses from labor and delivery and walked the other way as I just didn’t feel up to elaborating on why we’re still in the hospital 16 weeks after our encounter with them.  I set up in one of the weird little lounges on the floor waiting for the call from the unit and pondered what decorator decided that pictures of polar bears would go well alongside the Great Wall of China mural (once again, at a moment when I’m not able to focus much on anything else—it’s polar bears again).


I got back to Rudy around 8:30pm and he was resting comfortably with the line in his neck and the suspect one gone from his arm.  Dr. Robert still feels very good about where he is, but put a hold on extubating tomorrow.  That really bums us out.  We were so close—and still are, but wisdom would dictate that Rudy have at least a day of rest since this afternoon unfolded into more of an ordeal.


At long last it’s quiet here in Rudy’s room and I’ll just sit here with him for awhile as Nurse Betty keeps an eye on everything with her trademark quiet efficiency.  Weary?  You bet, but tomorrow’s another day and we’ll look to get back on track.  Please pray with hope for Rudy—that he’d get good rest and be strong to move off the vent this week and that, now that the picc line has been changed, this bout with infection is safely behind us.

Homage to a Hero: Dr. Robert Kelly

Dr. Robert checks on Rudy
Dr. Robert checks on Rudy

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.

One more day’s wait…

I just heard from UCLA that the Lymphangiogram will take place tomorrow (Tuesday) at 9am.  The rarity of this procedure is underscored by the effort it has taken to get doctors, techs, facilities and materials together.  Again, I am moved by the lengths to which people go for our son.  A few people with many important things to do have been doggedly persistent, and we are especially grateful to Dr. Mary Mazel and Dr. Robert Kelly, who spent a good bit of their weekend tracking things down by phone and e-mail.  Again, this is a diagnostic tool that may help the team locate the source of the lymphatic fluid that keeps coming into Rudy’s pleural cavity.  Of course, it may reveal nothing, but we would rather wait and have some information before another surgical procedure.

So, please pray for this procedure tomorrow; that it would give the team a clear picture of what’s going on with Rudy so that it can be quickly and easily addressed.