Trish just called to say that they came to pick Rudy up for the cath procedure. He’ll be sedated and then Dan Levi will go with a scope up through an artery in his groin to his heart so they can get a very detailed look at all that’s going on there. It’s a relatively safe procedure, but we’re praying for Rudy and that there might be something Dan sees which might indicate why he isn’t moving off the plateau he’s been on. More updates to come…
Author: Rolf
Getting our bearings
Forgive us for not posting for a couple of days. So glad Rudy’s Beat has some dedicated subscribers who get concerned when there’s no news. No big developments in Rudy’s condition. He’s had some fevers, indicative of infections common to such a long hospitalization. The fluid from his chest tube seems to be decreasing so that’s positive. For now, there haven’t been any major setbacks so that in itself is progress.
By definition a journey like this is disorienting. Life these past months has been dictated by circumstances we didn’t choose or plan for, so we’re always in a state of reacting. Over the long Thanksgiving holiday we were forced to slow down a bit and re-chart the course. As Trish mentioned on Thursday, my back has taken me out of things so it seems that no matter where she is, Trish has to deal with incapacitated bed-ridden babies. While I’m still uncomfortable, I am hoping that I’ve achieved the right balance of rest and medications that has me headed in the right direction.
We said good bye to Oma on Friday, who understandably had a tough time pulling herself away. It was such a blessing to have had her and Opa here for such a long time but, if we’re realistic about how far we have to go from here, there will no doubt be other places where we’ll need extended support.
Today is a beautiful Sunday in Santa Barbara and Trish and I are preparing for this week’s deployment. She’ll head back to Rudy this afternoon as it’s been killing us to be away from him for such a stretch.
This morning, I really am burdened for Wilson, Max and Olivia and what this process is asking of them. To make sure the next holiday doesn’t sneak up on us like Thanksgiving did, we took time yesterday to put up the Christmas tree and some decorations. While Olivia and Max got caught up in the moment and happily hung ornaments, Wilson had a hard time gearing up his enthusiasm as he realizes that, barring a rapid change, our Christmas will include time at UCLA. Wilson tends to foresee things a bit quicker than the younger two–he already knows we’ll say good bye to Mommy for the week when she leaves in about an hour and is brooding quietly around the house , while Livy and Max are still blissfully unaware as they swing from the avocado tree. They’ll compensate with a much more dramatic display when they see her getting into the car.
These are just some of the challenges that come with the reality we’re living under and, as Trish wrote Thursday, it helps us to focus on the thoughtful actions of people around us who carry us through. Sure, I would have loved a picture-perfect Thanksgiving with Rudy and extended family all under one roof, but just because it didn’t happen, I wouldn’t want to forget the thoughtfulness of others that was so present during our weekend:
For nurses who humored our constant calls to check on Rudy; for Kathy for sitting with Rudy yesterday when we couldn’ t be there; for neighbor Mike mowing my lawn; for friends like Katie and Brandon who invited Livy and Wilson over to play; for neighbor Eric playing catch with Max; for Greg and Kim having the kids over for fun play; for Noelle taking the kids to church; for the team of people who’ve taken slots to watch the kids after school each day of the week and for those who keep us well fed.
We echo our kids’ oft-expressed desire for life to return to “normal”, but in the absence of that, remain so grateful for the little things that make the disorientation bearable.
PS–I wonder how Greg Lawler survived before finding subjects as photogenic as our family. Wilson and Max think it’s pretty cool to be on the web. I’m just wondering why he hasn’t called me for a sitting yet.
Road Trip to Rudy
Probably won’t have much time for a post today as we’re loading up the kids and driving down to see Rudy for the day. We had a couple of “normal” days at home. Trish slept most of Friday and I went to a chiropractor for the first time in my life. It helped…I think.
Friday night we went to the Parks and Rec flag football playoffs to cheer on Max. They won in the first round (which brought encouragement and satisfaction for the kids), but lost in the second (which brought encouragement and freedom for my weekend). So, Saturday I raked the leaves off the lawn (which felt refreshingly normal), picked some avocados and then helped Wilson and Max fabricate a practice dummy for their sword skills. While most of our community focuses on preparing for earthquakes, mudslides, floods and fires, I have to ask if anyone is preparing for hand-to-hand combat. Whether they be marauding Orcs, Storm Troopers, Pirates, Trolls or Goblins, they dare not come from the north. Sleep soundly, Santa Barbara, Wilson and Max have honed their skills and will see to it that no foe sees the other side of Fairview.
Thanks for all the comments on Greg’s Pictures. Loved the poem a new friend posted on seeing them. I have wondered about the strength Rudy has had to discover far sooner than most people do, but love to think of his smiles underneath all of that tape.
Rudy’s world in pictures
Greg Lawler posted a picture album from his visit with Rudy. Check it out!
Pacing for a marathon
Thanks to everyone for your concern these last few days. I think we know what it means now to “hit the wall”, but Trish and I have enjoyed some good rest. Oma is taking a shift at Rudy’s bedside so we’ll try to maintain a slower pace for the next couple of days. We certainly know the importance of “taking care of one’s self”, but there’s just no way to go through this without being stretched.
Rudy is stable. The general indicators are that the fluid drainage is decreasing. The strategy has included increasing feeds to his stomach (you might recall these were suspended several weeks back due to the NEC concerns with his intestines), but part of why this whole process may be dragging on so long is simply malnutrition. While the calories from TPN coming intravenously are good, food coming through the stomach makes for better caloric loads. After he did well on pedialyte yesterday, they started some high octane formula yesterday evening and are watching carefully to see how it processes. His tummy is puffy, but there are good bowel sounds and movements (he’ll really enjoy reading this when he’s in high school).
In case you haven’t found them, Greg Lawler posted some cute pics of Rudy yesterday and today. Check them out here and here.
Hail, Cesar!
We were so excited to see the wait for a donor heart come to an end last week for Cesar. As he battles back after his transplant in the room next door, having learned the hard way that In-N-Out and Burger King might not be the best in post-op nutrition, here’s more of his story:
There’s a regular shuffling of the chairs between rooms here in the CTICU. If we find ourselves short, I check through vacant rooms to see what I can find. The nurses tend to be concerned for our comfort and often lead the search for a nice rocker or recliner if we look like we need it. While our stay is approaching a length to where we feel enough ownership over this room that we might repaint it, there’s no dibs on the furniture and if the nurses need it, they have no problem coming for it.
I remember coming in one morning the week before Halloween to find that all of our chairs had been cleaned out. As I set off on my quest, a nurse explained that several family members of the newly arrived patient next door had spent the night and needed lots of chairs.
Introductions between neighbors in the ICU tend to be slow in coming. Most families come in shocked and are so focused on what’s going on with their child that there really isn’t much attention left to be paid to meeting the neighbors. Many kids are only in the unit for 2-3 days until they’re stable enough to be moved to the floor, so it usually takes seeing the same faces for about five days before one gets introduced and acquainted.
For about that long, I noticed a steady stream of people coming and going from the room next door. Walking by, I caught glimpses of the tall kid laid out on the bed with the usual tubes and hoses. Like most patients, he came in here in pretty rough shape but after a few days I noticed his eyes would be open and he’d be holding court with nurses, doctors or the guests that always seemed to be visiting.
Our formal introduction came on Halloween, when Cesar came rolling down the hallway in his full Batman costume pushed by Liz, his older sister, as he wasn’t going to miss out on the festivities. That evening, I think there were close to a dozen people in his room watching videos and playing video games (Cesar came prepared with his own Playstation). While Rudy wouldn’t know Halloween from any other day, we were missing our kids a great deal that night so there was something comforting in seeing family and friends making sure that our neighbor wasn’t going to miss out on a memorable holiday just because he was in the CTICU. We stopped by as we left sometime after 11pm and were met with expressions that said, “What, you’re leaving already?” Cesar declared that there would be pizza arriving shortly, but since he stopped short of an edict, we begged off and got some sleep.
In the days following, Cesar went for walks about twice a day and always made a point of stopping in. We, in turn, stopped by his room a couple times a day. Through this, we learned that Cesar was also born with Hypoplastic Left Heart Syndrome, went through the Norwood operations and then needed a heart transplant at age 12. He was back in the hospital because he was rejecting this heart and was going to need a second transplant. In learning his kinship with our son, Cesar visited Rudy’s bedside, looked him over and with the authority that comes from experience said, “Rudy’s gonna do really well. I just know it.”
I suppose it’s natural to lament one’s own circumstances, but life in the ICU shows us that there are different flavors of agony and I often walk away from conversations feeling deeply for what people have to face and thanking God for what we’ve been spared. For Cesar and his family, the burden was an angst-laden waiting game. On the one hand, they would have as little as five hours notice before surgery; on the other, the wait could be as long as six months for a donor heart to come available. However long it took, Cesar was going to be in the hospital until a match was found.
In order to survive extended stays in the ICU one is wise to learn from the example of others, so we are so grateful for Cesar and his family. Enrique and Maria amaze us in their ability to extend themselves in maintaining work and family. While Santa Ana is within the LA area, there are likely times where traffic makes the drive about as long as the one from Santa Barbara; yet they are here almost every evening, even if it means driving in late after work for just a couple hours to be with their son. His older sisters, Angie and Liz, are blessed with looks and charm that most likely keep their dance cards full, but they’ve taken an inordinate number of shifts at his bedside keeping him company. While we don’t like for Rudy to be alone here, it seems even more pressing for kids who are more cognizant of their surroundings. So I am amazed at the lengths they go to in making sure Cesar has company.
But most moving is Cesar himself, who goes beyond simply having a positive attitude to embodying a defiant joy. He’s quick with a welcoming wave through the window. Even though his walks down the hallway are slow and require a nurse to push his IV stand and keep an eye on all the lines, my attention is diverted to the huge “Crusty the Clown” slippers on his feet that make the whole scene evoke laughter more than pain. As much as he might drag his feet on some of the assignments he’s had, he’s excited about getting back to school. I’m not sure he has the green light from his parents, but he speaks of getting a Husky puppy when he’s back home and is threatening to name it after one of the doctors.
Make no bones about it, the ICU is a scary place where kids and parents are faced with circumstances that are the stuff of nightmares. To be here is to take up a battle position and wage war against the opponent. We take on any sort of demeanor in such a showdown; we can get angry, hostile, fearful or overconfident as we fight against that which scares us. But leave it to a teenager like Cesar to be the most rebellious. He demonstrates the greatest defiance in laughing before the foe, fully aware of it’s might but unwilling to let it steal his joy.
All hail, Cesar—our conquering hero!
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.
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.
Rudy's Beat 