Another reason to love Dan Levi

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.

Rolf
 
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!!
 
Dr Dan
 
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!
 

Evening Update

We got a voicemail from Dr. Dan this evening telling us how great Rudy looks off the ventilator and, if we didn’t already know it, that we have a tough little guy.  My phone conversation with Dr. Robert this evening confirmed that and gave more detail on the events of the day.  I guess I was a bit off in my previous post in that, while the team was planning on taking out the tube within the hour, Rudy got it out himself about 30 minutes ahead of time.  It needs to be in just the right place and only a few centimeters can shift it out of place, something he was able to accomplish with his tongue and swallowing muscles.  Dr. Brian claims to have checked in on Rudy early this morning and told him to get rid of the tube, so I guess he was just being a good patient.

What makes us very glad right now is that the team is very encouraged by how good Rudy looks.  He’s breathing in the low 20s with saturations in the high 70s.  While he does get a bit agitated, he is able to calm himself down with the pacifier.  This has reportedly presented a problem of ingenuity in the CTICU, where they have gadgets that can probe just about every part of the body through any chosen orefice, but no appropriate technology for keeping an infant’s pacifier engaged.  Dr. Robert reports that quite a few innovative attempts have been made with various tubing and tape contraptions, but most of the time it requires a highly trained human index finger to hold it in place.  Hold on, everyone–we’ll be there shortly.

It’s Happening…

It’s a little after 5pm and the procedure is happening now.  I left Rudy in the Cath lab sedated waiting for Dr. Dan who was addressing an emergency in the CTICU.  Turns out the emergency is in the room next door to Rudy’s so when I got back to Rudy’s room I was able to wish Dr. Dan well as he headed down to Rudy…a few minutes later he was back up tending to the little baby girl next door (please say a quick prayer for this precious little one who has the same condition as Rudy) but he is now back down with Rudy again so things should be underway. 

If Dr. Dan does only one catheter, the procedure should take about 90 minutes.  If he sees something in the first go around that warrants a second catheter, then the procedure could take 3+ hours.  So, I’ll post again later tonight when Rudy is back safe and sound.

Transfer from crib to table.
Transfer from crib to table.

 

 

 

 

 

 

 

 

Knocked Out
Knocked Out
Cath Lab
Cath Lab
Dr. Gary Satou just stopped in to say he was going to go down and check on Rudy!  -Sweet guy!!!

3:20–off to the lab

Trish just called to say that they came to pick Rudy up for the cath procedure.  He’ll be sedated and then Dan Levi will go with a scope up through an artery in his groin to his heart so they can get a very detailed look at all that’s going on there.  It’s a relatively safe procedure, but we’re praying for Rudy and that there might be something Dan sees which might indicate why he isn’t moving off the plateau he’s been on.  More updates to come…

Fluoroscopy

We did “the walk” again this morning as Rudy had to go down to the Cath Lab for a fluoroscopy.  Rudy looked like a child emperor in his carriage as a half dozen people wheeled him and all his gear down to the elevator in his big crib.  Trish and I made like we were helpful, moving chairs or pushing a door button here ore there, but it was hard to divert our attention from the respiratory therapist’s hand regularly squeezing the inflator that they use to help him breathe when he’s off the machine.  Hard to believe it’s been almost six weeks since the last time he was out of this room.

 

The Cathertization Lab is a high-tech room filled with gear one can’t even imagine.  We watched from the control room as they put him on a table with a huge bank of eight flat-panel displays behind it.  When things were ready, Dr. Dan, Dr. Lee and the RT put on full body wraps of lead armor to protect themselves from whatever invisible thing this machine does.  Lying there on the table, Rudy’s defense was limited to little more than a clean diaper.

 

All of this was to give the team a very clear image of what’s happening with Rudy’s chest when he tries to breathe—a “video Xray” of sorts.  For all the time it took to transport Rudy and get him positioned, it’s startling that they needed to look for only 15 seconds at what was going on to make their assessment.  There is no sign of paralysis, detachment or extensive nerve damage affecting the muscles of his left diaphragm.  It just isn’t moving with the vigor it should. 

 

The good news is that this is not something that requires a surgical fix.  The bad news is that the main remedy for this is time; time for Rudy’s nutrition to take effect and for the muscles to get strong.  Perhaps there is some minor nerve damage, but attention is focusing back on his chylothorax issue.  The fluid leaking from his chest is draining the protein he needs to get strong.  Without fixing this, we can’t begin feeding him into his stomach which would really further nutrition.  So, though we haven’t heard definitively yet from Dr. Reemtsen, word is that Rudy will be placed on the surgery schedule for Monday and will only be removed if there is zero output from the chest tubes.  We appreciate having a team that isn’t too quick to operate, but there also comes a point where waiting things out has run its course. 

 

That’s the update for now.  Still praying for peace and protection to all of you back home in Santa Barbara.

A Day That Leaves Your Head Spinning

Tonight we’re sitting here a mix of emotions as we watch fires in Montecito.  As so much of Santa Barbara is powerless, we actually have more comprehensive news coverage than people there.  The news media doesn’t need to employ too much of the usual overstatement on this one.  It looks ominous.  Lord, please keep our friends safe.  Our family is well out of harm’s way, but we did have to assure the kids of that over the phone.

 

All of this comes on top of a really loaded day here at the ICU.  As we mentioned in our previous post, immediately after extubation, it became clear that Rudy wasn’t able to move much air through his lungs.  They did a quick ultrasound and are planning to do a more comprehensive fluoroscopy first thing in the morning, but they are expecting they will see that his left diaphragm isn’t expanding and contracting properly, likely because of nerve damage that would heal itself over time, but much longer than the team would like to see Rudy in the hospital.  So, a decision may have to be made for a second surgery to fix the issue.  While this is tough news, the up-side is that we likely have some definitive information the team needed to move forward.  There is no way we could have detected this without extubating him.  So now we know and can address it.

 

Dan Levi was his trademark self, and spent quite a bit of time giving a thorough explanation and talking us through the issues at hand.  He, along with everyone else, regrets that it’s taking so long, but remains optimistic because Rudy’s heart function is very good.  Issues with the diaphragm and the chylothorax are certainly complications, but not way outside of what would be expected with an invasive surgery like the Norwood.  While he used enough big words to remind us of his medical expertise, his most clarifying statement was refreshingly free of jargon: “Most babies who don’t survive this have sucky heart function from the start, but that’s not Rudy.”  Thanks for laying off the Latin, Doc.  We’ll see you in the morning.

 

In the midst of this, there was a lot going on in the ICU.  Perhaps just an average day, but I think the length of time we’ve been here has made us more aware of what’s going on with other patients as we know their parents and check in with each other.  We hear each other’s struggles and cheer each other’s victories.

 

·             Cody had his fourth surgery this month and parents Rick and Nicole are hopeful that this one did the trick.  Their day was capped off by a phone call from Tommy Lasorda wishing Cody the best and inviting him to be his VIP guest at a Dodger game next season (very classy)

·             Cesar got his new heart and is lying in the room next to us recovering well.  We checked on Enrique and Maria and the rest of the family in the surgery waiting room this morning as they had a grueling marathon down there.  They started prepping him at 3am.  Trish and Nurse Katrine heard the helicopter touching down above our room with his new heart at 7am.  They got word things were done around 1 pm and finally got to see him up here around 4pm.  They left the hospital an hour ago in great relief and we hope they get lots of rest.  While they were prepared to wait 5-6 months for a heart, we celebrate with them that it only took three weeks.

·             Baby Logan has made it 36 hours off the ventilator, but his left lung just started collapsing.  If what’s going on in here isn’t of enough concern, Ramey and Brett are from Santa Barbara as well, but much closer to the fires and she’s received word they need to prepare for evacuation.

·             The room next door was prepped for a new baby coming out of surgery this afternoon.  The nurses started covering for each other during the arrival and we kept to our room out of the way.  That tone of quiet intensity was back.  When we left for dinner a couple hours later, my heart fell when I noticed the room was empty again.  They couldn’t have moved the baby to the floor so quickly. 

 

Life has ups and downs no matter where we are, but a process like this amazes me of how intense these can get.  It seems that every time we try to plot out plans for even a week in advance, we are thrown a twist and need to adjust things.  So, we ask for continued grace to be able to deal with what’s immediately before us and trust that we’ll be able to handle the rest when we get there.

 

As tumultuous as this place is, tonight I am so grateful for the people who work here and are courageous enough to involve themselves in such extremes for people like us who are struggling through them.  We’re in Nurse Katrine’s care tonight—and I don’t just mean Rudy (amidst everything else, she was just kind enough to bring us tea).  Tonight we continue to pray for Rudy; that tomorrow would bring clarity for his next steps.  We also  pray for those dear to us in Santa Barbara and what they might be facing right now.

Move over, Kevin Bacon…

You might recall in my recent post on Dan Levi that I joked that I was waiting for the next “small world” connection we would make.  Well, Dan forwarded my post to his dad, Ilan Levy, who sent me an e-mail pointing out the following:

In addition to the many connections you made with Dan (Stanford, NJ, Morristown, Santa Barbara, …Free food…) I may have another link to offer:  Your last name GEYLING – triggered my memory of a FRANZ GEYLING from Bell Labs.  This man, Franz Geyling, was a Department Head at the Whippany Labs and also a “specialist recruiter” for Bell Labs at Stanford.  [“Specialist recruiting” meant the targeted recruitment of MS and Ph.D. candidates in specific specialties that Bell Labs needed.]  He recruited me in 1969 to join Bell Labs in Whippany where I started a very satisfying 27-year-long career.  I owe him a debt of gratitude for this pivotal “first real job” that lasted 27 years.

The connections just keep on coming.  Yes, this is my dad, who also happened to recruit me for my first job.   Isn’t it a long driveway, Ilan?  How long did it take you to shovel the snow off it?  Oh wait, as you used descriptors of “satisfying” and “gratitude” maybe he recruited you for a different job.

Over the past few months several friends have pointed out that, while this is a journey we never would have chose, there are unique discoveries and richness to be found.  I am so thankful for everyone directly involved in Rudy’s care, but smile that it gives me another reason to be grateful for my dad.  Thanks, Dad!

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.