Author: Rolf

High- and low-tech grossness.

I got an iPhone this week.  Does it make my life complete?  No, but it might make me cooler than you (unless you bought the 16gig model).  It’s a pretty nifty gizmo and Wilson kept himself and me entertained for most of the trip down from SB today as he tracked our progress by GPS and downloaded various applications.  The most remarkable had to be the virtual whoopee cushion which has limitless permutations making for hours of fun.  Turns out the whoopee cushion has universal appeal as Wilson has wowed just about every staff member who’s come in to see Rudy–regardless of how many degrees they have.  I think it’s some welcome comic relief as there’s an intense vibe here tonight–a full unit wtih lots of very sick kids.

We were encouraged to see Rudy and to hear a good report from Dr. Rick about his condition.  He’s very alert for long stretches as he’s only getting small doses of methadone twice a day.  Everyone has had a chance to evaluate the CT scan and subsequent Xrays and Rudy’s chest looks very clear.  Based on that, feeds to Rudy’s tummy were started yesterday.  He keeps holding his ground on the vent and is making slow progress (it’s currently at 14bpm; pressure support of 11).  Both Wilson and I got chances to hold him, but mine featured a nice soaking of Rudy vomit during one of his percussive respiratory treatments.  The team took him off feeds for a bit, but then surmised that it was more along the lines of what babies do when they get shaken with a full tummy.  So, I lay claim to a first in Rudy’s life–the first parent to get spit up on!!!!

Dr. Brian stopped by this evening and confirmed Dr. Rick’s report.  Everyone is very positive about where Rudy is–he is stable and holding good ground.  Hopefully the changes to his nutrition will push him over the final hump to get off the vent–he’s so close.

I think he’s really glad to have his biggest brother here.  Wilson has been great holding him, talking to him and reading to him.  I’m glad Wilson came with me.  He’s good company, just as long as I get my share of turns with the whoopee cushion.

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.
 

Chugging Ahead!

I think of Rudy alot, but for some reason I’ve found myself more fixated on his condition than usual.  I’m glad someone as kind as Nurse Faye was with him today to pleasantly tolerate my check-ins by phone.

There’s good cause for encouragement.  After giving Rudy a couple of days to rest at 16bpm, the team continued the weaning process.  The pressure support is already as low as it needs to be, so this morning they stepped him down to 14bpm and he’s tolerated things fine all day.  Only a few more steps to go (we pray)–the next one should come tomorrow morning and then we’ll see if they want to do some more sprints before extubation.

There was concern about the IV line going into Rudy’s groin as it didn’t seem secure.  After some back and forth over replacement, adjustment, etc. the team decided to remove it today as he really doesn’t currently need anything more than the IV port in his arm right now.  While we’re dealing with that area of the body, the team also removed the Foley catheter so he could just let loose into his diaper like all little boys should.

So this is progress:  while Rudy is still hooked up to a few monitoring lines, other than the breathing and feeding tubes there’s only one line going into his body through one arm.  Nurse Faye says that this means he’ll get to experience something for the first time tonight:  A BUBBLE BATH!!  As Trish is planning to drive down this evening, I requested they wait so that she can join in the fun.

Thanks for your prayers–this week is off to a good start!!!

Time flies over the weekend…

Let me start out by apologizing to our dedicated Rudy’s Beat readers.  We miss one day posting and start getting concerned e-mails.  Thanks everyone for following our journey so closely.  We had a full weekend and, as you read below, time in Rudy’s room isn’t as idle as it once was, so it was harder to get a post in.

As much as we want to be with Rudy every minute of the day, we’ve recognized that Olivia, Max and Wilson have needs as well.  Part of this means giving them time with both of their parents together, so Trish got home Friday night in time for dinner with the men at the mission.  We lazed around the house a bit on Saturday morning until we went to watch Max’s first basketball game of the season.  Once that was done, I headed down to UCLA with Max as my sidekick as he said he was tired of weekends without Daddy.  This ended up getting us there just before dinner, which was later than usual as several of the nurses and doctors reminded me on our arrival–I wonder what these dear people would do without us to entertain them.  Of late, it seems that the unit has been very busy with lots of sick kids demanding long hours and attention from the staff.  So we sit calmly in our room and are grateful that there hasn’t been much buzz around us lately.  Always grateful for check-ins with staff when they stop by, but glad this isn’t driven by urgent needs for Rudy.

Rudy has been holding steady and the team is happy with his progress.  As Trish reported, Rudy was getting tired with the sprints and vent drops, so Dr. Robert decided to let him rest on a plateau of sorts–16bpm and he held this well.  It might feel like a bit of a letdown to stop the forward progress, but viewed in light of where Rudy was two weeks ago, it is a very different picture.  He held at this level well for the last two days and even let the team turn down the pressure support a bit (technical details I won’t get into, but also steps toward breathing on his own).  The chest Xrays are clear and the methadone has been turned further and further down to where he is very alert and interactive.  The downside of this is that he now gets fussy (as babies do) and needs to be entertained.  The only problem is we’re limited in many of the usual resources (carrying him, putting him in the swing, on his tummy, etc).  So he lies on his back, waves his arms and kicks his feet, which can result in him getting tangled in some of his lines.

I got to hold him for long stretches last night and today and he really liked it.  I was encouraged that twice today he got very agitated with his heart rate getting up near 200bpm, but we were able to calm him down without having to give him a rescue dose of sedatives or turn up the ventilator rate.  Max and I showed up this morning ready to watch the game with chips, salsa and the works.  Max got quite a few comments for showing up in his Giants helmet.  As for the game, I won’t say much about that, but it sure was fun to be there with two of my boys.  Max held Rudy for about 30 min and that was pretty cool too.

We left Rudy in the care of Nurse Amy and headed home, where we are now.  Everyone’s showered and ready for bed and I’m looking forward to the game we’re about to play, but more getting to my own bed thereafter.

Grieving Uncle Rixie

While so much of our world has to do with what goes on in Room 5439 at Mattel UCLA Children’s Hospital, we are aware that life, with all its twists and turns, goes on around us.  The signficance of this became profoundly clear to us today as we learned that our dear Uncle Rixie passed away.  He made it to 100 in November and then even through Christmas (photo below) and New Years, but peacefully left us while napping this afternoon.

Just this week, I took a look at the calendar to see if there would be a way I could steal away from the Rudy routine and pay a quick visit to Uncle Rixie in the Bay Area.  I’m not wracked by feelings of guilt for not doing so, but just sadness over missing out on a chance to be with him (anyone who had the pleasure will know instantly what I’m talking about).  I have been fortunate to know many remarkable people, but I’m not sure how many could realistically be described as possessing true greatness.  I’m certain of at least one; who combined remarkable achievement, deep character and personal warmth over a lifetime to the benefit of thousands.

Over the last few years, Rixie maintained that he had lived long enough.  With his passing, there isn’t the pathos of one being robbed of years yet to be lived.  Yes, 100 years constitutes a “nice, full life”, but that doesn’t preclude us from longing for one day more.  I was so hoping for a chance for he and Rudy to meet.

I miss you “Big Pardner”!

Rixford Kinney Snyder 1908-2009
Rixford Kinney Snyder 1908-2009

Down to Ten!

Trish and I have both been in Santa Barbara today to be with Grandma and Grandpa and get the kids back off to school. Had lunch out on the pier and enjoyed that “only in Santa Barbara” view.  We’ve been checking in down at UCLA by phone and are very encouraged by Rudy’s steady progress.  Two more steps down on his ventilator rate mean he just came down to 10 breaths per minute this evening and seems to be tolerating things well.  The team will likely continue to step down the rate, but will also start to turn down the pressure with which each breath comes from the ventilator.  In my check-in with Dr. Lee this evening, he mentioned that Rudy’s prealbumin, which is an indicator of nutrition, is now at 29!  The last time they tried to extubate him, it was less than 10.  With good nourishment, they hoped to maintain a level of 20 so it’s great to have Rudy well above that.  The prayers for nutrition are clearly being answered and he now has lots of energy for breathing.  Go, Rudy, Go!!

Trish will be heading back to UCLA tomorrow and we’re excited that one of us can be with Rudy during this encouraging swing.  While the team is keeping an eye on some very small fluid pockets on his lungs, these haven’t grown significantly over the last week so we can continue to hold him–and something tells me that’s what Trish will be doing most of the next few days.

In addition to your prayers, we also have a minor logistical request for those who are so inclined.  A few people who called Trish today might have wondered if it sounded like she was whitewater rafting.  Actually, in a fit of efficiency this weekend, Trish laundered her cell phone–she might just be taking the whole hygiene around Rudy thing a bit too far.  It’s now downy fresh and static-free but doesn’t actually send and receive calls.  We did set her up with a new one (Dante overlooked a 10th circle of Hell–the cell phone store).  Unfortunately her contacts didn’t transfer so if you speak with Trish regularly by cell phone, she would appreciate you calling hers sometime in the next few days so she can capture your number–or send it to her by e-mail.  Pat me on the back for restraining myself…there are just too many jokes to make here.

A number we like to see dropping…

I just have time for a quick post as I had a hard time putting Rudy back in the bed so I can make the drive home. At nine this morning, we broke through the “20 barrier” as the ventilator rate was turned down to 18. He’s been handling it well–alert for long stretches, sleeping peacefully while breathing comfotably and maintaining a good level of oxygen saturation. As many have told us they pray for Rudy every night after they get the blog e-mail around 9pm, you might remember that this is also when a vent step comes so you can pray specifically for Rudy to continue the good progress he’s making.

As hard as it is to leave Rudy when I just want to keep on cheering him on, I’m going to go get Wilson the two dozen Diddy Reese cookies I promised him and then make it home in time for some basketball with Max before dark. It’s back to school tomorrow. Not sure how much this will be celebrated at our house tonight.

Rudy’s World In Pictures

I was looking over past entries this weekend as I sat here with Rudy and enjoyed looking through Greg Lawler’s pictures again. Seems like a lifetime ago, but if you’ve joined us on the journey more recently, I’ve put a thumbnail on the right column that can take you to them. They’re too special to get buried in the archives. Thanks again, Greg!

The Stockdale Paradox

With the dawn of the New Year, it’s fitting to take stock of our situation and do some assessment.  So much has happened with each week; and sometimes each day has such unexpected twists and turns that, as I drove down the coast today, I tried to assess things on a larger perspective.  Trish and I often find ourselves trying to give answers to general questions people naturally ask about Rudy’s condition.  As natural as these questions might be, they are difficult to answer in Rudy’s case.  We’re encouraged because he’s making progress so we can’t say he’s doing poorly; but is it accurate to say he’s doing “well” when he remains in an ICU facility reserved for seriously ill children.

 

This week, I realized the relevance of the Stockdale Paradox (Collins, Good to Great) to our situation.  Admiral James Stockdale survived an extended POW ordeal while many around him perished or went insane with waiting.  He credits his ability to maintain a dual mindset.  First, he stoically confronted the brutal facts of his reality.  Second, he held an unwavering faith that he would prevail despite the difficulties.  For Stockdale, the brutal fact was that he was inhumanely imprisoned in an inescapable remote location without any assurance that his comrades even knew he was still alive.  Yet, never losing site of this, he lived life with a mindset that he would one day be free.  He speaks of the many who weren’t able to do this—who mistakenly thought they’d be able to escape the guards and then flee into an unknown jungle with no strength, gear or idea of which way to run; or who held forth arbitrary deadlines for release (“we’ll be home by Christmas”) only to get more demoralized as they passed with no change.

 

I’ve found it helpful to apply Stockdale’s mindset to our own situation.  In confronting the brutal facts of our situation I don’t start with a scenario as grim as his, but we constantly keep in view the fact that Rudy is facing some very serious circumstances—just this week, HLHS claimed the life of another child here (even though he had passed through several of the milestones we haven’t even gotten to yet).  It would be delusional for us to get complacent or lulled into believing that this is going to be easy:  Rudy is facing something that should never be underestimated—it kills kids.

 

Yet, we are kept going by a sense that we will prevail over this.  Everything I see the team doing is done with this in mind.  There’s no trivializing what we’re up against, but every step is done because of a belief that we can prevail in the endgame—he will come off of all these machines, breathe and eat on his own and leave this hospital.  We don’t know when (but do we ever wish we did!), so having had a major holiday milestone pass with us still at UCLA, we’re not going to arbitrarily hold out another.  So we’ll try to keep moving forward holding an appropriate balance of realism and hope without approaching the poles of delusion or despair.

 

This has involved our letting go of any of our own timelines, and once we’re able to do that, we can see that Rudy has made steady progress on one of his own.  Today was a great day, where I held him for two stretches of over two hours (loving those NFL playoffs).  The team removed his arterial line and the Foley catheter so he only has two lines going into him (compared to something like six at one point).  The team has been very slowly weaning the ventilator rate down (12 hr steps at a minimum) to where it’s currently at 20 bpm and he’s managing well.  They’ve decreased his pain meds to a very small dosage, more to ease his withdrawal from them than to manage any discomfort, so he’s alert and twitching around just like a baby should.  The chest Xrays are clear of fluid (we’ll see how that holds once they start feeds again).  This week he weighed in at over 11lbs, which means the nutrition is doing some good—the bigger he is, the better chance he has of getting past some of these milestones.

 

Does this progress mean he’s clear of danger?  No, but it does bring realistic hope.  We’ll take it and thank God for it.