We Will WIN this Waiting Game!

Well,  Rolf and I made the switch-a-roo and I’m back with Rudy at UCLA.  Rolf didn’t get home until after 11pm last night and then got off to an early start at work this morning; I left for LA as soon as the kids went off to school so we were kind of like two ships passing in the night but, hopefully, future exchanges won’t be so quick in nature.  It will take some time to adjust to this new “commuting” routine as Rolf and I take shifts between Rudy and home but, it seems, time is the one definitive factor in this scenerio of which we have an abundance!

Rudy spent today sleeping and recovering from yesterday’s surgery.  He is pretty wiped out…opening his heavy eyes periodically only to close them seconds later.  That’s okay, though!  As much as I’d love to be reassured by his big, bright, lively eyes, I’m grateful he is able to rest comfortably.  Everyone I’ve talked to today has said the same thing…what Rudy needs now is TIME.  He needs a couple of days to see a reduction in and eventually elimination of the fluid draining from his chest, he needs big doses of nutrition into his gut and then time for his muscles and body in general to strengthen, he needs a week to 10 days to see possible extubation from the ventilator and then, ultimately, he needs alot of time to learn to feed without a feeding tube!  Of course, the big risk for Rudy right now is infection and the longer it takes him to reach all these milestones, the greater the risk of infection and setbacks.  A tricky balance continues but I’m confident that no matter how weary we may get as we wait, we will win this one!!!!  A few weeks ago I prayed we’d be home by Thanksgiving, now I’m wondering if bringing Rudy home by Christmas is even realistic!  It’s so hard to know so we step back, regroup, readjust expectations and continue to take it ONE DAY AT A TIME!  Thank you for waiting along with us diligently praying!!!!  We can’t thank you enough…

Daddy holds RudyDaddy’s turn to hold Rudy!!

Get some rest, Rudy!

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.

6pm…He’s Out

Rolf just talked with the surgeon and Rudy will be back in his room in about 30 minutes.  He was able to “tie off” the duct and did some other things while he was in there…more detail on that later I’m sure.  Dr. Reemtsen said there is an 85% chance this will address the problem so our prayers continue that Rudy’s body will respond as it should!!!  Please pray for a quiet and comfortable night for Rudy and a safe trip home for Rolf later tonight.  Okay, (BIG sigh) the end of another day…I’m so grateful God’s mercies are new every morning!

5pm…He’s In.

I just got the call here at home from Rolf in the surgery waiting room that Rudy went into the OR at 5pm.  There was some delay in getting him to the OR as the attending CTICU doctor couldn’t release Rudy until they got some numbers back from the lab but he’s there now…Dr Reemtsen’s part will be done in 30 minutes, Rolf will probably see him in about 90 minutes and I’m pacing the kitchen floor at home in Santa Barbara.  It has been good for me to be home with the kids today doing school drop offs/pick ups, football practice transport and going on the Girl Scout Brownie field trip (taking cookies to the fire fighters!) but I must say it is agony not being with Rudy too.  I’ll head back to take my shift with Rudy tomorrow morning and stay until Friday most likely.  Please pray that this procedure will do what it is supposed to and that this will be the push Rudy needs to get past this “fluid” hurdle and positioned for some progress once he recovers from surgery.  Thank you…thank you!

3pm Status Update

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.

The Plan for today–Surgery

Last night I asked that there would be clarity this morning surrounding the course of action we need to take.  We have that, because the 3AM chest Xray showed an a great deal of fluid on Rudy’s right side, so all parties agree that we’ve given more than enough time for the chylothorax to clear with medication and it’s time to fix the problem surgically.  I wish we would have been able to get past this without having to do another operation, but compared to the one he already had, this is very minor.  They’ll come in through his side and then tie off the thoracic duct so no more lymphatic fluid will come into the chest cavity.

Rudy is an “add-on” case on the OR schedule so it’s not certain when we’ll get called into surgery.  They’ll make sure it happens today, but it will be in between or after the major cases.  So, probably not before noon, but some time before 6pm.  Stay tuned and I’ll keep you posted when I know anything.

On other happenings around the unit.  We were excited for Rick and Nicole as Cody got to go home (but my enthusiasm comes nowhere near Cody’s whose been here for about a month for brain surgery).  I feel genuinely happy for families as they get discharged, though I always sense an awkwardness from the parents–almost a guilt that they’re abandoning us.  I’m certain I’ll feel the same when it’s our time and will struggle to contain my celebration until we’re far away from here.  But regardless of our own difficulties, it’s no fun to watch someone else have to go through it and it sure makes me grateful when people can put this place behind them.  I hope there was lots of happy noise at Cody’s house last night–and that it won’t stop for some time!

Logan moved across the unit over to Cody’s old room on the PICU side late yesterday afternoon.  Pretty nice digs–a built-in couch, cabinets and a private bath, but more importantly it means that he doesn’t need the high-tech CTICU gear anymore.  Be encouraged, Brett and Raime, you’re one step closer!

One Lazy Sunday

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.

No Tube to Watch

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.

The Plan for this Weekend

Trish went back to SB for the weekend, so I’m here hanging with Rudy.  The 4pm Doctor Parade just came by (OK, they call them “rounds” but it always feels like the former as I step out on our front “porch” and wave as they go by).

After looking at the flourscope study, Dr. Reemtsen feels there is no damage to the diaphragm, making the key concern nutrition and conditioning.  Nutritional status can be determined by checking prealbumin levels.  Rudy’s level is 9; it should be 20.  This confirms the plan of action determined with his chylothorax.  If we can stop the leak, Rudy can retain the protein and nutrients he needs to breathe on his own. 

The only way we will avoid surgery on Monday is if the chest tube output stops completely.  It just dawned on me that Rudy might be a bit of a troublemaker.  They put Rudy on Monday’s surgery calendar three hours ago and since then, wouldn’t you know, the chest drain output has gone down to pretty close to nothing.  Reemtsen is a cool customer, but he wonders if Rudy is trying to drive him crazy.

Turnabout is fair play, so Brian got the last word by sending Rudy on a two hour sprint.  Just because the timeline got extended a bit they aren’t giving Rudy the weekend off.  He’ll be doing three a day as he seems to tolerate these well and every little bit of conditioning helps.

So, I’m looking forward to a weekend watching the tube!

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.