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.
Rudy's Beat 