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.

The CUTEST big sister ever…

Rudy’s journey is draining on every member of our family in it’s own way, which makes me very grateful for when my kids have SUPER days. Livy was excited to spend the day yesterday with Macey–said she was looking forward to it several times a day over the weekend, couldn’t stop talking about it afterward until she finally collapsed on the couch after dinner. From the picture Greg posted on his blog, I think I know where her energy went…

http://www.zinkwazi.com/blog/index.php?showimage=1194

Thanks, Greg and Kim! Perhaps a simple day, but oh-so-special for Olivia!

Happy 100th Birthday, Uncle Rixie!

Perhaps this is a bit off topic, but if there’s anyone worth making an exception for, it’s Uncle Rixie. I think there are only two people in the world who can actually claim him as a legitimate uncle, but dozens who claim him as a surrogate uncle, parent or grandfather. Long story, but when my father came to the US to attend Stanford as a freshman, he was taken under the wing of his Western Civ professor. Dad became one of many people who learned that Rixie and his wife, Elliott, were very poor at keeping acquaintances, but very good at adoption. With no children of their own, scores of fortunate people became their family.

I had Rixie’s big day noted on my calendar for some time and without question thought I’d be in the Bay Area with him to celebrate. But not only do our circumstances make that difficult, but Uncle Rixie’s own health is such that he declined any celebration and isn’t feeling well enough to talk on the phone. There’s so much good to say about him it’s difficult to know where to start, but anyone who has had the priviledge will understand my need to make mention of him.

If you’ve lived one hundred years, you remember life before every family had a car or telephone. You lived through two World Wars and saw 19 different US presidents (starting with Teddy Roosevelt!). In Uncle Rixie’s case, the 100 years were filled with meaningful service to Stanford University and thousands of students in the classroom and as Dean of Admissions (how do you think I got in?). While the milestone he’s achieved in his lifespan is impressive, more so are the scores of friends he’s made along the way. I’m certain I am one of many who lament that we can’t celebrate him en masse today.

So tonight I no longer wish I could be in two places, rather in three. It’s hard to beat sitting here in Santa Barbara listening to the unbridled laughter of three incredible kids, but I’d give an awful lot if I could have just a few minutes to be with Rudy at UCLA or to sit with Uncle Rixie in his apartment in Palo Alto. Happy Birthday, Uncle Rixie! Congratulations and thanks for everything! I sure would love to work out a way to squeeze in a trip to the Bay Area. But given the challenges we’re facing I didn’t want this incredible milestone for an incredible man to pass without some mention.

Missing the Munchkin

I checked the Mannings’ blog just about every time I walked past the computer today. Just now, I came by and saw the post I had hoped I wouldn’t have to see. Katie passed away this afternoon and I’m at a loss for words. I only wish Alan and Vickie, who we only know through our blogs, weren’t on the other side of the country. They have been courageous parents over the last five months and such a comfort to us. Now we pray for peace and comfort for them as they mourn their little Munchkin.

Peace and Comfort to Katie, Alan and Vickie

It was such a comfort to be with everyone last night at the graduation. In days like these, it’s good to be reminded of God’s power to work miracles and change. More than that, it was such a blessing to be around people we love who we haven’t been able to see much due to the schedule we’ve been keeping.

No time for a big update now as this morning is going to be one of the rare times we’re all at home together, so we’ll make as much of those hours as we can before Trish and Grandma Jo head back to UCLA. We’re still waiting to see if the fluid around Rudy’s lungs clears up enough so they can skip the surgery on Monday. The fluid coming into the drains and the Xrays seem to indicate fluctuating symptoms, so please pray that it would be perfectly clear whether the situation demands surgery or not.

All of this seems so mundane and minor right now as our hearts are with Alan and Vickie at Yale who have come to the end of what can be done for their dear Katie as she battles HLHS. As similar as our journeys have been, I can’t imagine what they are going through but send them love and prayer as they sit bedside and wait for peace or a miracle.

This is a brutal monster we’re fighting.

Steady and Stable

Rudy had a strong day today. His numbers held well and we heard few alarms. One therapy that seems to be working well is the prescription of T3 for his thyroid deficiency. You might recall that his thyroid function shut down a few weeks back, which would impact his overall vitality. Having tried some other approaches yesterday they started T3 dosages which, along with the other medications, seem to be slowing the chest drainage. Yesterday we had 120cc over 12 hours. Today we have 90cc during the same period. When I left on Monday it was somethingin the range of 240cc, so we have made clear progress. Dr. Reemtsen has Rudy in the surgery queue for Monday, but we are praying the trend will continue so that we can cancel this one as well.

In the meantime, we have made progress on sprints off the ventilator. Yesterday and today, he cruised through two one-hour sprints each day, so thanks for your prayers and please pray that this trend will continue. Nurses Filma and Denise got a bit carried away doting on Rudy today and ended up putting him in a “snuggle-up” and propping him way up so he could look around. At first he seemed a bit dizzy, but it grew on him. Now he looks regal; propped up a bit in a bit of a throne.

It’s 7:15 and Trish and I are going to drive up to SB tonight (yes, I wasn’t joking–our anniversary reservation is at Chick-Fil-A in Oxnard). It will be fun to all be at home for the first time in a month. We’re looking forward to a quick visit tomorrow from Trish’s mom. In light of Grandpa’s radiation starting this week, we’re glad Grandma Jo can steal away for a couple of days to meet Rudy.

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!