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.

16 Years of Wedded Bliss…

This week, I based myself back in Santa Barbara because the extended absence from home was asking alot of Wilson, Max and Olivia. Those of you in SB know what a perfect and clear week it was up there–good for the soul to look out all the way to the islands. Great fun to be with Oma and Opa and the kids every evening after work, but I was also counting the days until Friday when I could come back and see Rudy.

In addition to seeing Rudy, I was also looking forward to being with Trish on our anniversary today. They say it’s the thought that counts, so I came in and told her that I had thought of bringing her flowers, but they aren’t allowed in the ICU. But I didn’t come in empty-handed. On the way down here I came across the perfect gift–a trophy that says “BEST WIFE” on the plaque. With great flourish, I pulled it out of the CVS bag and presented it to her. She turned it over in her hands and looked puzzled until I realized I left the price tag on it (a steal at $9.99!). Once it was removed the tears welled up in her eyes and she has been speechless since. The only sounds she’s made have been the sobs everytime she looks at me or passes by her anniversary gift. Nailed this one, baby–nothing but net!

And it doesn’t end there. While we’ll stick to our lunchtime regimen of soup in the cafeteria downstairs, I may just pamper her with extra crackers. I just need to make sure I have enough left for the big anniversary dinner splurge at Chick-Fil-A on the drive home. You better believe she can have two sides–waffle fries AND cole slaw!!!! Sorry ladies; curb your envy–this dreamboat has left port!!

Hard to believe we’ve been married 16 years. I can’t recall the course I envisioned we’d take, but so much of life is unexpected and that’s what makes it an adventure. Even when some of the adventures include gut-wrenching challenges, there is such simple joy in having a companion to walk with. We didn’t have much choice for where we could spend this anniversary, but the choice to laugh in the midst of it is one we won’t easily relinquish. So HAPPY Anniversary to us!

The Most Intense Day of Our Lives

Thanks so much for all the prayer on our behalf today. I don’t think I’ve had a more loaded day. It’s 11:15 and we just got back to the Tiverton guest house after spending some time with Rudy. The team is very pleased with his status. It was good to see him back in the room, albeit unsettling. Trish was pretty wiped out after all of this and we decided she would go back to the room for a rest. I stretched out on the fold-out chair at the back of Rudy’s room and dozed off intermittently while different members of the team regularly checked on him and made small adjustments here and there. The rarity of this condition was underscored by how many doctors were coming by to take a look–a Norwood procedure is a big deal. Even before we were able to get up to see Rudy, I ran into Dr. Satou in the lunchroom and he was well apprised that the procedure was completed–word travels fast.

It was pretty easy to overlook me behind all the equipment so I picked up a few comments from other doctors lauding Dr. Reemtsen’s skills and was comforted to see him stop in about every 30 minutes to check on things. The nurse told me later that the last time he came by was about 8pm–he had promised us in our initial meeting that he would be closely supervising Rudy’s care and he is certainly making good on that. Throughout the afternoon the reports remained consistent–the vital signs and the labs were all coming back right where they wanted them to be. The one detail of concern is that he isn’t urinating as much as they’d like (indicating that the kidneys have kicked in), so that’s one thing they’re working on. It really is an incredibly disruptive operation–the body gets chilled down to a point of suspended animation and then put on a bypass machine to circulate blood without using the heart. It’s not like they can just flip a switch and have everything come on again, so these next two days are very critical as they slowly bring things up to speed together. One doctor likened it to a tightrope walk, but they liked my own analogy of trying to balance a scale on a wobbly table. Rudy’s situation both before and after surgery has been one of critical balance, but the team doesn’t feel like they ever had to chase after him because he got so far out of allowable tolerances. Praise God.

This day had a comforting ending. I went back to the Tiverton to check on Trish and checked in with the kids by phone on the way. Poor Olivia is having problems holding it together and was begging us to come home. Trish was tired and worn down. Not only was it an exhausting day, but this is about the time postpartum hormonal stuff should be happening on top of it. We decided to go out and get a quick dinner and then say good night to Rudy up at the hospital. We ended up spending over an hour up there as the room was so peaceful. Rudy progress is a comfort, but more than that was the time we were able to sit and visit with Nita, the Cardiologist who will be watching over Rudy tonight. Another super-gifted doctor and a gracious warm-hearted person who served as a very friendly debrief to our day. She’s one of many who are patient with repeated questions and her knowledge of what we’re facing puts her in a position to offer unique comfort. She again reiterated that this is the time for us to sleep–they’ll be in there with Rudy almost non-stop tonight, so we can rest easy and leave him in her and Nurse Monina’s hands.

Thanks again for praying us through the day.

Just Got In

It’s 2:30 and they let us in to see Rudy about 15 min ago. He’s looking a little pale compared to his color before the surgery and has a lot more tubes around him. The next 48 hrs will be very critical and there is a team led by nurses Faye and Mary working constantly around him. They say the vitals are very good, some blood gas numbers that just came back are perfect.

Feelin’ Sophie’s Pain…

Today was a bit of a whirlwind as we once again woke up in Santa Barbara and are going to sleep in LA (or getting into bed and trying to). It’s a day that leaves us really torn between the needs of Rudy and the needs of Wilson, Max and Olivia. We envisioned getting up early, taking care of logistics around the house, packing up and getting in the car to LA around ten. But between the list of chores being a bit too long and the kids deserving a bit more of our attention, we were finally rolling just after noon in two cars so that Oma and Opa could drive on home with the kids after a visit with Rudy.

We kept abreast of Rudy’s condition through calls to his nurse during each shift. He has remained relatively stable since we left Yesterday. I’ve noticed that no one uses generic terms to describe his status. “He’s doing fine”, “He’s doing well.” or “He’s doing great.” are generalizations that just don’t work considering the larger realities. So, instead we get the information we need in clinical language. He is in a very delicate and critical place, so he’s not fine well or great. But his body continues to waver within acceptable tolerances for the dozens of things the team is keeping an eye on. I ask questions and have received patient explanations for the same things multiple times and am amazed at how many different ways the team employs to try to keep things in balance—oxygen, nitrogen, drugs with names I can’t pronounce, a transfusion, slowing down his breathing, speeding up his breathing, raising his blood pressure, lowering his blood pressure… I liken it to a very delicately balanced scale where small weights are added and taken away from each side to try to maintain equilibrium—only the scale is on a table with a short leg so it takes constant adjustment to keep everything where it needs to be.

I didn’t believe Maria, our nurse, when she told us that Rudy had opened his eyes today as she was changing his diaper. But she said they had scaled back the drug that was paralyzing him because…oh heck, I don’t know why—guess I’ll have to ask again. I think they wanted him to be able to be a bit more responsive. But she showed us how his foot would recoil just a bit when you tickle the bottom of it. Today they have his right foot clear, so we’ve had fun holding on to that little ankle and rubbing those little toes. Seems like a good match for the left, but we haven’t been able to see them next to each other yet.

The kids and Oma and Opa came in after Trish and I had a chance to check in. This time, they knew the routine and lined up like junior surgeons at the sink to wash their hands before they went in. Maria cautioned us that she didn’t want Rudy to get agitated as his signs were all stable, so the kids did their best to touch gently and speak softly. Shortly into this, Rudy surprised us all by giving a quick shudder with his arms and legs—the most we’ve seen him move since he was hooked up to all these tubes. So much for not agitating him, but Maria was cool with it. Maybe Rudy just wanted to get up and play with his siblings.

Wilson took quite an interest and sat there watching Rudy and asking various questions about all the gauges and tubes. I answered what I could and lied about the rest. Olivia and Max wrote on the white board and also discovered that the windows looking into the unit can be used as dry erase boards too (but we wouldn’t let them—the stuff written there by the staff seems important). After 30 minutes, Trish and the kids went out into a waiting room while I sat there with my parents for another 30 before we all headed for dinner, leaving Mom behind as she wanted to stay with Rudy.

The kids wanted to say goodbye to Rudy after dinner so we returned and were just about through the hand washing ritual when Trish waved me over to the bed. As we all stood there, Rudy had his eyes open halfway for just a few seconds while tears welled up in ours. Just as quickly his were closed, but there was a big crocodile tear right below them. The nurses tell us this happens. Even though an infant may be paralyzed, they do sometimes shed tears, which can indicate they are in pain. One of those heavy moments that drops on you in the middle of something like this. I pray his eyes were just watering because I hate the thought of being so close and having to watch him cry.

More tears started flowing pretty soon as we started to go. Wilson, having the most understanding of what’s going to happen tomorrow, understood the chance of how final this goodbye might be and quietly tried to hold it together as he walked away from the bed. Pretty soon Max and Livy joined in, but we think their tears were more over the fact that we were having to say good bye for the week. We hugged as long as we could at the car amidst pleas to not close the door, but finally we had to and stood there watching the van pull away. Trish and I walked away torn and I thought how unfair my parting words of “be good at school this week” were. I’m able to take tomorrow off because I’d be useless and without any ability focus, yet here I was telling them to stick with the routine despite all the thoughts and feelings going around in their hearts and heads. Trish dropped notes to their teachers in all their bags so they’d be forewarned if anything seemed amiss. We promised to call the school to get a message to them once Rudy was done as they wanted to know right away. It’s our own little version of Sophie’s choice—I don’t want to leave Rudy, but it kills me to see my kids go through a week this loaded and not be with them.

Rudy’s first up for surgery in the morning. They’ll come to get him about seven, so we’ll go at six to sit and pray with him. Now it’s 11pm and we’re settled in our room, but I’m going to walk over to the hospital after posting this just to be him for a little bit. I don’t need sleep right now—I’m just going to be sitting around tomorrow, but I do pray that Dr. Reemtsen and everyone in the operating room is getting plenty. Lord, be with us all tomorrow.

Max’s Great Day!

Max had a great day. Many people were touched by his precious response to not being able to play in a sports league this fall and several called to see if they could help out with rides, coaching and practices. The main reason we didn’t feel like we could do this was the weekend commitments as the kids will likely be coming to LA regularly to see Trish and Rudy during the stay in ICU. Then, our kind-hearted friends Jamie and Scott invited him to play on their flag football team whose games and practices are all on weekdays (who knew there were still youth sports leagues out there that didn’t require you to sign away your weekends?). Max had his first practice yesterday and, even though I wasn’t able to be there, his unabridged recounting probably ended up taking longer than the practice itself. Scott will have to explain to me what smelling your teammate’s armpit has to do with football, but Max sure thought that was cool. He came out of his room multiple times after bedtime tonight to tell me one more detail about practice (each of which I had heard twice already). At some point the rising sternness of my tone and his own tiredness got him to stay put but on my last check in, he drowsily lifted his eyelids and said, “Dad…I just wish I could have football practice everyday…”

Thanks, Jamie and Scott, for including Max and thanks to the many others who express concern for and extend compassion to our kids. As focused as we are on Rudy, our prayers are also for Wilson (11), Max (9) and Olivia (6) and how all this affects them. We appreciate your including them in your prayers as well.