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”!

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.

An eerie resemblance

Our many readers in Kansas might be very interested at the insight we got while watching the “Insight Bowl” last night. Everytime they showed KU coach Mark Mangino, I was trying to place the face. Perhaps Rudy is destined for Jayhawk greatness!? (scroll down below)

13-weeks-2 mangino

Happy Birthday, Grandpa Dick!!

We were all in Goleta today and enjoyed celebrateing Grandpa Dick’s birthday this evening. We had fun sharing our “favorite memories” and the children wanted to hear Grandpa’s first hand account of what it was like when Moses parted the Red Sea! Lots of laughter amidst a simple family time together.

gpa-and-kids

gma-and-rolf gpa-r-t

Back at UCLA, Rudy has had what have come to be the usual ups and downs. On the “up” side, he’s done well with the wean of the ventilator and spent most of the day comfortably at 32bpm. His kidney function has come back very well to the point where there’s little concern in this realm. His blood pressure and most of the other numbers are very good. On the “down” side, his chest tube fell out again this morning (no you aren’t re-reading a previous entry). They tend to come out over time and often when the output is low as the pressure holding them in place decreases. Hoping for the best, we pray that this means there is no more fluid and the cavity will close up like it should. But Rudy’s history has been otherwise–where things look fine for a few days and then the fluid comes back. While we would prefer the fluid just take care of itself without needing to do another pleurodesis, we want to move past this once and for all so we’d also be fine with the fluid coming back immediately and making it clear that we should do the procedure. Above all, please pray for definitive information.

The other issue impacting this is the fact that they had to cease feeds as Rudy’s stomach appeared to be upset. Our main concern here is that the fluid on the chest seems to increase when feeds are going, so the fact that they aren’t feeding him could give a false read on the chest fluid. This presents challenges for the doctors to assess what is actually going on and what course of action to take, so again, we’d be grateful for some clarity.

As you can see in the pic above, Trish was inspired by Olivia’s new look and got a haircut of her own. “New Year, New You!” I must say, she’s looking fine!

Sunday with Livy and Rudy.

After our two days at home, Livy and I came down together to spend the day with Rudy. She still gets distracted by her new haircut every so often and tosses her head or stares at her reflection a bit. More than once she’s come up to ask, “Daddy, does my hair look cute?” with all the rhetorical uncertainty of one asking if there’s going to be gravity tomorrow. She’s endeared herself to the nurses and that’s resulted in various new experiences: helping Nurse Denise with labels, Uno with Nurse Katrina and making marshmallow dradles and playing dradle with Nurse Aliza. Turns out she’s a shark and won all the chocolate.

In the middle of it all, Rudy is continuing according to his own timeline. A highlight today is how alert he’s been. He’s been awake for long stretches and looking calmly around the room at us with his big eyes. The team has been hopeful that he would be able to regulate his own blood pressure without medication and he’s done fairly well with that. It varies significantly when he’s awake vs. asleep, but it hasn’t been high enough for any period of time that has led them to medicate.

The primary concern is the fluid on Rudy’s left lung. The right side has responded very well to pleurodesis and, as Dr. Brian prepared us for the likelihood that he might have to do the left, it’s looking more and more that way. The fluid output from the left side increases significantly when he’s being fed–since they cut off the feeds yesterday, it’s subsided to a very small amount. There’s some possibility that, once it all drains, that the tissue on the left side could all pull together and put an end to this, but Rudy’s history wouldn’t make us all too confident in that. Please pray specifically for resolution on this issue this week–either that it would go away completely on it’s own or that Brian would be able to address it completely with pleurodesis on Friday.

As I’ve said before, this whole situation is puzzling to the team and it causes them to wonder if Rudy might have some kind of anomaly in his lymphatic system. This would not be entirely uncommon, considering the anomaly with his heart nearby that brought us here. Should pleurodesis not address the fluid situation or if it ends up simply diverting it to someplace else in the body, there would not be many options to deal with this. What is troubling is that, apart from this, Rudy is so strong on all other fronts. His heart repair is very strong, his hematology is right where it needs to be and his kidneys have shown they can bounce back. The remaining hurdles of his breathing and his feeding might take time ,but that is something the team knows how to work on. What’s happening with Rudy’s lymphatic system is very uncommon, among our team and the many colleagues they have consulted with around the country, but we need to get past it so please pray that we would be able to get past this this week.

Tomorrow we’re looking forward to being back in Santa Barbara to celebrate Grandpa Dick’s birthday together and then Trish will assume duty back here on Tuesday. We pray that your are all savoring your holidays celebrations and vacations.

Christmas at home…

Our Christmas wish for two lazy days at home came true–well maybe not altogether “lazy” as two of the activities included putting together a trampoline (thanks, Oma and Opa, for a Christmas gift that’s already seen hours of laughter) and weeding the rose bed that’s been bugging me for weeks now (but I haven’t been home with enough daylight hours to do anything about it). So, nice to have some therapeutic activity and, as I know some will read with concern (like you, Jane), my back feels pretty good after all is said and done.

As for Rudy, he’s received the same attention and doting care he’s grown accustomed to. We’ve had regular contact with Nurse Katrina and Dr. Robert. He’s having some of the usual hiccups–unfortunately the chest tube on the left has continued to put out significant amounts of fluid (70cc daily) that now has a high percentage of chyle, so we may be seeing chylothorax on the left side which might require pleurodesis on that side. Perhaps a bit too early to see what course Brian will want to take, but he did prepare us for this possibility. Dr. Robert became concerned today about his stomach and how it was processing nutrition so he halted the tube feeds. Depending on what an Xray shows tomorrow morning, they may start again–they always want to be pre-emptive and never get to where they’re chasing Rudy. His blood pressure is being watched, but it’s acceptable. It’s been a bit on the high side lately, but Robert wants to use as little medicine as possible in order not to stress the kidneys. Robert also halted the vent wean today as he doesn’t want to throw too much at Rudy at once, so the rate is about 35 bpm and Rudy’s comfortable there. They’ll decide what fronts they want to move on tomorrow, breathing and feeding-wise.

We are blessed to have Grandpa Dick and Grandma Jo with us. Trish’s Dad finished his 6 weeks of radiation treatments on Wednesday and, on Thursday, her parents boarded a plane bound for LAX! They plan to stay a couple of weeks before Dick’s oral chemotherapy begins. We are so thankful they were able to come and celebrate a late Christmas with us here at home. The big event today was Olivia’s first haircut! After resisting the idea for several months, she decided yesterday that she was ready and that she wanted to donate her hair to “Locks of Love”. Our little princess was very excited about going to the salon and was quite the little lady sitting patiently as the stylist clipped away. We’ll miss her trademark long locks but the end result is pretty adorable.

Thank you for your continued prayers! It is hard to believe that we are coming to the end of 2008 with our Rudy still at UCLA and still with no clear indication of when we’ll bring him home. Prayers for continued endurance and optimism in addition to full recovery for Rudy are GREATLY appreciated.

With apologies to Clement Clarke Moore…

The Christmas gifts I’ve enjoyed giving the most are the ones I’ve made. Since I got my workshop set up in the garage this past year, I had hoped to enjoy some of that creative activity leading up to Christmas. Unfortunately, unforeseen circumstances didn’t leave any time for woodworking, but this morning I tried to exercise some creativity of a different sort. Haven’t written much poetry since elementary school, so I thought I’d borrow from someone else…

‘Twas the night before Christmas, in the CTICU on 5 East,

A few creatures were stirring, because they never cease;

The fluids were hung by the bedsides with care,

In hopes that all would remain peaceful there;

The children, not “nestled” but comfortable yet,

Saw lots more than sugar-plums thanks to the meds;

Dr. Ryan in his coat, Dr. Andy in clogs,

Kept quiet watch as they checked patient logs;

Far up on the roof there arose quite a clatter,

But they wouldn’t have heard what was the matter.

Nurse Susan at her station would not have noticed,

Her attention on Rudy was lovingly focused.

The flat helipad with its lights flashing on top,

Made landing much easier than most other stops,

The touchdown was simple, but the rest was quite hard,

For patients and visitors with no proxy card,

But this one was different and he knew some tricks,

The card readers and elevators were no match for St. Nick.

He stuffed his sack fuller than he ever had yet,

For scores below worried that he might forget;

To the 5^th Floor through the stairwell he came with a bound,

Right through the alarmed door with nary a sound.

Yes, dressed all in fur from his head to his foot,

But he cleaned himself up because they don’t allow soot.

Into the PICU he walked without ringing,

Quietly as the pumps and the vents did their singing.

His eyes kept on twinkling; his dimples still merry,

But tender concern showed behind that nose like a cherry.

While the nurses’ attention was never averted,

Somehow he slipped into each room unobserved,

He’d given up the pipe as he’s now much the wiser,

And at each door he carefully lathered with the sanitizer.

The belly like jelly still shook only slightly,

As he kept his voice quiet and laughed only lightly;

That wink of his eye and the twist of his head,

Assured the small patients they had nothing to dread;

He spoke soothing words along with his work,

Being careful to turn with nary a jerk,

After carefully laying what he’d brought on the bed,

He’d give a small whisper and a pat on the head;

Without any rush he went door to door,

Making sure he missed no one on the entire floor;

He returned to his sleigh and offered a prayer,

That these little ones wouldn’t be much longer in there,

As he prepared to alight from this special stop,

The children were assured he hadn’t forgot.

So he loudly exclaimed as he drove up into the air,

“Be home next Christmas, and I’ll see you there.”