Author: Rolf

Rudy-ey-hee-hoo!

Rudy was ready to be the mascot for Livy’s Brownie troop’s Austria presentation at Thinking Day yesterday, but stayed home due to the rain. We still had to post this for reasons of sheer cuteness and to warm the hearts of all our readers back in Austria (Rudy’s HUGE over there). Rewind the clock about 42 years and you pretty much get my childhood (because all the kids dressed like this in New Jersey, Mom!)

[I also trust you’re impressed with the standing trick. If we put the little yodler against the back of the couch and help him lock his legs, he can stay up for a good 30 seconds–but good luck getting him to keep the hat on that long!]

Sent from my iPad

Happily doing our time

Rudy and I have had an uneventful stay here at UCLA. We got our room assignment around 2pm yesterday and Rudy had fun riding all the way there sitting up like Caesar on an inspection tour.

We had to repress some habitual and territorial instincts as, for the first time, our room was not in the 5th floor ICU. We’ve ventured onto the 3rd floor and discovered they have lots of doctors and nurses to charm here too! I can’t get over how quiet it is–we’re tucked into the coveted room at the end of the hallway with a nice view down Westwood Blvd. We have yet to see another patient but the extensive decorations on the doors and scary equipment and labeled carts (chemotherapy/transplant/etc), make me grateful to be an easy short-term case. We’re just two guys in our man cave logging some sats…

Being in a new place doesn’t promise anonymity. Our nurse finally had to ask me what was going on as there seemed to be a disproportionate number of docs stopping by and checking over the chart, considering the procedure. Good to have fans check on Rudy, but I had to laugh at the way they’ve robbed me of one of my favorite hospital pastimes–secretly absconding with needed medical supplies! It’s a learned heart-parent behavior to create secondary procurement agendas around hospital visits. Sometimes you need to play cat-and-mouse, asking multiple staff for the same thing so you get sufficient quantities–some have even been known to hide things and play stupid so the staff has to go get more. The whole game gets much easier if you have a familiar unit and your cute kid has several nurses on the take.

I guess we’re not as sly as we thought because I was just contemplating the prospect of working a new floor, when a certain high-placed physician just came out and asked if I had any supplies at home that needed to be replenished. Realizing the gig was up, I handed over my list (those who know my wife would not be surprised that I was dispatched with an actual list) and in short order my quest was complete. Not sure what to do with all the free time now…

Rudy slept well. We woke up early and watched the sun come up and the campus come to life below the window. Nurse Amy promised me the worst coffee in the world and may have delivered (but it took me two cups to come to this conclusion). We’ve been reviewing the doctor parade as it marches by. The ENT team has been by and gave their thumbs up, so discharge will be coming, though I think Pulmonary and Cardiology will probably come by the reviewing stand before we go.

King of all he surveys and then a happy wake-up! Ready to head out!

Sent from my iPad

Prepping for UCLA and Remembering Nina

It’s back to UCLA tomorrow to downsize the trach.  We’ve got a 7am check-in for what should be a quick procedure at 9am.  Everything should be pretty straightforward in the OR, but the team will want to monitor him for at least 24 hours in the ICU afterward to make sure everything looks right.  It’s been awhile since I did a hospital shift, so I’m giving Trish a break and going to camp out with Rudy.

While any trip to the hospital with Rudy raises our anxiety and concern, it all pales in comparison with the news we got that little Nina went to heaven this morning.  Once again we’re reminded that parenting can contain agony in far too many flavors.  There’s nothing that can be said to bring Nina’s suffering into perspective, but I am so grateful that in her six years she was on the receiving end of such attentive and passionate love.  We marvel at the courage parents like Todd and Rosy are able to muster in such heartbreaking circumstances.

Peace, comfort and grace.   Updates tomorrow when we have something to report.

“Forward” Progress

Rudy’s been working hard with his physical therapy and today was a milestone day:

Yes that’s right, he has the ability to go FORWARD now.  He’s been able to push himself back in his car for sometime, but going forward hasn’t been as easy.  A big reason this is possible is that he’s able to straddle this car and sit up by himself for so long.  Pretty cool–it’d be a shame to have such a nifty car that makes all those noises and not be able to go places.

Rudy’s doing well with the speaking valve in all day.  He’s needed a break a few times where he got tired and we needed to take it off.  We generally are finding that we need to give him a bit more oxygen flow to keep his sats where we like them.  He babbles a good bit, but has long quiet stretches where he just takes it all in and quietly contemplates things.

Not like he’s ever had much problem sleeping, but he really goes out like a light after a day of such exertion. So much so that he didn’t even realize he was having a slumber party with Livy:

Cuteness!
Livy woke up bewildered from the flash and Rudy saw that as a window to make like a bed hog.
Kinda hard to stay mad at the little half-heart 😉

Preparing for Pulmonology

It seems to have become our custom to start off the new year with a round through all of Rudy’s doctors.  Last week was cardiology, endocrinology and labs.  Tomorrow (Tuesday) we’ll hit the road early for a pulmonology appointment at UCLA.  This will be the first time since we learned that Rudy failed his sleep test so we’ll be interested to see if there’s any course of action to address this.  Hoping so, but also preparing for another one of those inconclusive outcomes that come with our confounding little patient.

Of late we’ve felt like we’re stumbling through a lot of life–so we welcomed the confounding 80-degree weather here in Santa Barbara this holiday weekend and headed for the beach.  Along with this respite, there come the daily ones from taking joy in the moment and embracing it when the opportunity comes.  Tonight at dinner we had one of those moments.  Just had to give you a taste via video: