I just got back to Rudy’s room this evening and he’s resting comfortably.  Even with the upheaval of surgery, he looks loads better than he did on the walk down to the OR.  I’ll spare you the geeky details, but they ran post-op labs and all of the numbers are right back in the range where they should be.  They were able to back the ventilator down from where it was this afternoon because he doesn’t need that much help breathing.  Getting that fluid off gave him some immediate relief, so now we’ll pray that the fix works.  The doctors expect to know in the next two days.  Assuming all goes well, we’ll be able to start loading protein as his malnutrition is just making it tough for his body’s systems to work like they should.

We’re glad today went well, but even a “minor” surgery makes for a day of anxiety.  I’m going to spend a few more minutes with Rudy in the quiet of his room and then make the drive home.  As I’ve been writing this, he’s actually gotten really alert so it’s cool to spend the last moments together looking into those big eyes.  I’m glad Trish had some good days at home with the kids, but we’re all disappointed that I wasn’t able to make it home for dinner.  It would have been our first one together at home in a long while. 

I’m ending another day so grateful for the dedicated hands that are taking care of Rudy.  Early this morning, Nurse Mary was indignant that I hadn’t yet held Rudy so she let me help with his bath and lift him up while she changed the sheets.  During the day, Nurse Rosella brought her personable blend of comfort and competence.  There was solid consensus among the doctors (Fellows Andy and Julianne, Drs. Brill, Reemtsen and the ubiquitous Dan Levi) and they were all very attentive throughout the day.  There’s no way to make a day like today anxiety free, but there is such comfort in being the center of so many experts’ attention.

Thanks for walking through it with us.  Rest well, Rudy–Nurse Mary and Dr. Andy won’t miss a thing.  Mommy will be here tomorrow before you know it.

We haven’t heard anything from the OR yet as far as the schedule, but Nurse Rosella has the rig set to go at a moment’s notice.

Unfortunately, Rudy hasn’t been comfortable at all today with his breathing and saturations.  They just sent out a bunch of labs and are getting another Xray to check on everything.  His struggle seems reminiscent of the days when he had lots of fluid on his lungs, so we’re praying it’s just that (which underscores that the surgery needs to get done).  But also praying that it’s not something that’s confounding or that will cause specialists of one area to put the brakes on today’s plan.

More when we know it.

It was a very quiet day here in the ICU.  I can’t say “peaceful” as Rudy struggled during his first two sprints and so they cut them off early and cancelled the one for this evening.  The primary suspect is his nutrition—he just isn’t getting enough calories or protein to get strong.  In his condition, breathing on his own takes a lot of energy and if he’s not replenishing calories then he’s not regaining strength.  His little body has such a delicate balance within which the team needs to work.

So the strategy of packing as much nutrition as possible began this weekend.  They’ve backed him off several medications (Lasix, Octreotide, Fentanyl) because he doesn’t seem to need what they do, but mostly because they represent ccs the doctors would rather have for nutrition.  So they’re stuffing him with the richest mix of TPN (IV feed) they can until there’s a green light for him to start feeding to his stomach again.

This makes for an intricate chain reaction of things we’d like to see fall into place.  Rudy is still on the surgery schedule for Monday to ligate the thoracic duct if the fluid on his lungs doesn’t stop.  Without the drain that fell out on Friday, the team relies on chest Xrays to assess this.  This morning’s looked very clear; let’s pray that tomorrow morning’s is indisputably clear.  Once we are convinced that this chylothorax (the fancy name) is behind us, the team will then re-initiate feedings to the gut—which will allow him to pack in calories and gain muscle strength so he can then make progress on the ventilator.  So, please pray for this all to come together and that there would be clear indicators for the team to make the decisions they need to make on Monday morning.  No curve balls, please!  We could say Rudy is making progress simply because he hasn’t had any setbacks, but it would be very encouraging to turn a corner this week.

One final note my friends at the Rescue Mission will appreciate.  Yesterday, Rudy started methadone therapy to ease his withdrawal from all of the narcotics he’s been on since birth.  So please pray for his recovery—don’t think they have NA groups for folks his age, but we’ll add this who knows how many things he might have to process one day thanks to this whole experience.  I wonder who he needs to make amends to.  The one truth I do cling to is that recovery happens in relationships so I’m extremely glad for all of you friends who are pulling for Rudy to make it on through.

As it turns out, the reason not much fluid was coming from the chest tube yesterday afternoon was because it was falling out.  This can happen–we’ve learned they don’t stay in there forever and, thinking positively, they sometimes fall out because the flow is ebbing.  They did a chest Xray at 3am and saw a small effusion, but nothing critical yet.  They’ll watch this closely over the next 3-4 days.  Not sure what impact this will have on the surgery we were going to have in two days to ligate the duct that is producing the fluid, so that will be this weekend’s minor medical quandry.  Dr. Lee did explain that sometimes the drain coming out and the closed whole allows pressure to build in the chest wall which redirects the fluid.  That’s what could have happened with the left side.  Like the theory; let’s hope that’s the case.

Rudy’s cranky this morning.  He’s had a touch of a fever so they’ve started antibiotics again just in case there’s an infection, but no other signs (low blood pressure, white count) are greatly amiss, so we’ll pray this passes.

Coverage here in LA has shifted to the Sylmar Fire so little is being said about things in Santa Barbara.  While it’s usually fun to see someone you know pictured in the LA Times, it’s startling when  they’re sorting through the pile of ashes that used to be their home.  Peace and comfort to Dave, Jill and their kids.  Just one of several I suspect we know up around Westmont who are dealing with challenges of their own.