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.

A Day That Leaves Your Head Spinning

Tonight we’re sitting here a mix of emotions as we watch fires in Montecito. As so much of Santa Barbara is powerless, we actually have more comprehensive news coverage than people there. The news media doesn’t need to employ too much of the usual overstatement on this one. It looks ominous. Lord, please keep our friends safe. Our family is well out of harm’s way, but we did have to assure the kids of that over the phone.

All of this comes on top of a really loaded day here at the ICU. As we mentioned in our previous post, immediately after extubation, it became clear that Rudy wasn’t able to move much air through his lungs. They did a quick ultrasound and are planning to do a more comprehensive fluoroscopy first thing in the morning, but they are expecting they will see that his left diaphragm isn’t expanding and contracting properly, likely because of nerve damage that would heal itself over time, but much longer than the team would like to see Rudy in the hospital. So, a decision may have to be made for a second surgery to fix the issue. While this is tough news, the up-side is that we likely have some definitive information the team needed to move forward. There is no way we could have detected this without extubating him. So now we know and can address it.

Dan Levi was his trademark self, and spent quite a bit of time giving a thorough explanation and talking us through the issues at hand. He, along with everyone else, regrets that it’s taking so long, but remains optimistic because Rudy’s heart function is very good. Issues with the diaphragm and the chylothorax are certainly complications, but not way outside of what would be expected with an invasive surgery like the Norwood. While he used enough big words to remind us of his medical expertise, his most clarifying statement was refreshingly free of jargon: “Most babies who don’t survive this have sucky heart function from the start, but that’s not Rudy.” Thanks for laying off the Latin, Doc. We’ll see you in the morning.

In the midst of this, there was a lot going on in the ICU. Perhaps just an average day, but I think the length of time we’ve been here has made us more aware of what’s going on with other patients as we know their parents and check in with each other. We hear each other’s struggles and cheer each other’s victories.

· Cody had his fourth surgery this month and parents Rick and Nicole are hopeful that this one did the trick. Their day was capped off by a phone call from Tommy Lasorda wishing Cody the best and inviting him to be his VIP guest at a Dodger game next season (very classy)

· Cesar got his new heart and is lying in the room next to us recovering well. We checked on Enrique and Maria and the rest of the family in the surgery waiting room this morning as they had a grueling marathon down there. They started prepping him at 3am. Trish and Nurse Katrine heard the helicopter touching down above our room with his new heart at 7am. They got word things were done around 1 pm and finally got to see him up here around 4pm. They left the hospital an hour ago in great relief and we hope they get lots of rest. While they were prepared to wait 5-6 months for a heart, we celebrate with them that it only took three weeks.

· Baby Logan has made it 36 hours off the ventilator, but his left lung just started collapsing. If what’s going on in here isn’t of enough concern, Ramey and Brett are from Santa Barbara as well, but much closer to the fires and she’s received word they need to prepare for evacuation.

· The room next door was prepped for a new baby coming out of surgery this afternoon. The nurses started covering for each other during the arrival and we kept to our room out of the way. That tone of quiet intensity was back. When we left for dinner a couple hours later, my heart fell when I noticed the room was empty again. They couldn’t have moved the baby to the floor so quickly.

Life has ups and downs no matter where we are, but a process like this amazes me of how intense these can get. It seems that every time we try to plot out plans for even a week in advance, we are thrown a twist and need to adjust things. So, we ask for continued grace to be able to deal with what’s immediately before us and trust that we’ll be able to handle the rest when we get there.

As tumultuous as this place is, tonight I am so grateful for the people who work here and are courageous enough to involve themselves in such extremes for people like us who are struggling through them. We’re in Nurse Katrine’s care tonight—and I don’t just mean Rudy (amidst everything else, she was just kind enough to bring us tea). Tonight we continue to pray for Rudy; that tomorrow would bring clarity for his next steps. We also pray for those dear to us in Santa Barbara and what they might be facing right now.