Another run for it

As we were driving back from the Bay Area, we learned from Nurse Gloria and Dr. Andy that the conditions were right for pulling the tube once again. Rudy’s chest Xray looked clear this morning and he was breezing through any sprint the team put before him this week, so they told us they were going to try it around 2pm. Just before 2pm, as I was thinking to say a prayer for Rudy, Trish and I heard our cellphones chirp and Denise (the full service nurse) had sent us picture and video messages of Rudy off and running.

We got home and Gloria confirmed that Rudy was sailing smoothly. In fact, she said that he just about got the tube out himself as he started working it with his tongue as they removed the tape. So, please pray that the lungs would stay clear of fluid. One of the questions remaining from last time was whether Rudy had a strong enough cough to clear his lungs (like most of us do). To this end, the team is hoping to get started on more nutrition tomorrow morning. They do feel like the NJ tube they inserted earlier in the week has found its way to an acceptable place so they can start to feed him directly to his intestines. They gave him a small amount overnight but then had to cut it in order to extubate. Hopefully the added calories will give him more stamina this time around. Breathing takes substantial energy for Rudy–seeing him last week after four days of breathing, there was a marked difference in his appearance as much of the pudgy face was burnt up by breathing. Wish it worked that way for grown-ups.

We’re back in rainy Goleta now with three great kids who were lovingly spoiled while we were gone, but appeared generally happy to see us. We’ll all go down to see Rudy on Saturday–always great to have the whole family together!

Missing Rixie and Four Great Kids

We’ve come to accept that, as Rudy’s stay in the hospital keeps extending itself, the demands of life and needs of our other kids are such that we can’t be with him around the clock. Even with that, it does feel surreal for both Trish and I to travel out of the area. We’ve had two places to check in on by phone over the last couple of days and are glad that kids in both places seem to miss us, but are doing well thanks to friends and professionals serving our family so generously (thanks Pammy and Robin for sitting with Rudy; thanks Sherry, Lisa and Emily for being so sweet to the Goleta three).

It would have to be a very rare person and relationship that pulled Trish and I away from Southern California right now. Uncle Rixie was that kind of person and we participated in a wonderful celebration of his life on the Stanford Campus. It was a beautiful afternoon and Memorial Church was lit up with the afternoon sunlight coming through the stained glass windows. It made me think of the times Rixie would walk with me through the church and, ever the historian, would tell of how Jane Stanford used to probe the carvings during construction with the tip of her umbrella to make sure the workmen were making them deep enough. Most touching was rediscovering his favorite quote carved into the West Transept which from then on became my own:

There are but few on earth free from cares, none but carry burdens of sorrow, and if all were asked to make a package of their troubles, and throw this package on a common pile, and then were asked to go and choose a package which they were willing to bear, all would select their own package again.

Your heartaches may be great, burdens heavy, but look about you, and with whom would you change?

Kind of fits with most seasons of life, but particularly this one. I don’t want anyone else’s problems. I’ll stick with my own.

We could have had a service that lasted for hours, but representative speakers did a great job capturing Rixie and the tremendous impact he had on so many lives and the University in his trademark way. One of the highlights (and Rixie would have LOVED it) was hearing Trish sing like an angel from the choir loft accompanied by the huge 1901 organ. Two amazing sets of pipes!! When I have more time, I will try to figure out if I can post recordings of her singing–it’s soooo cool!

Back at UCLA, Rudy is holding steady. Most comforting to us is the fact that he is resting and calm instead of being fussy. The team is keeping him sprinting and he’s making it through three 3-hour sprints a day without problem. The chest Xray looks very clear, so we’ll wait and see if they want to pull the tube again and give him another shot or if they want to get more clarity on why there were such secretions in the lungs last time. So glad we’re in the era of cellphones so they can keep up apprised as we drive back.

rolf-and-trish

Rudy Misses Me!

Rolf and I made it safely to Palo Alto yesterday and met up with Oma, Opa and Uncle Alex. As much as I hate to be away from the kids, it was great to have uninterrupted time with Rolf in the car ride up…it’s amazing how many random life details we had to catch up on. The special intimate getaway continues as we share a hotel room with my brother-in-law. Ha Ha Nonetheless, it’s right to be here and we are headed out the door for Rixie’s service soon.

We’ve checked on Rudy’s status by phone a few times each day…Nurse Kelly said she missed me yesterday as Rudy was fussy all day long. I guess once he got a taste of human contact, he’s not satisfied left on his own anymore. A string of sweet nurses came in to take turns holding him yesterday and I have a couple of friends headed over today to take a shift at, hopefully, calming him down (thanks Pammy and Robin). All in all, Rudy is doing okay. No new news to report. He did make it safely to radiology and back yesterday for the insertion of a NJ tube…there is question whether or not the tube made it all the way down to his intestines so futher xrays/ultrasounds will help to determine if we’re good to start the feeds again.

The team has decided to conduct some genetic tests in regards to his lung function to rule out things that might be causing all the delays in Rudy’s recovery. Part of the process, I guess, and hopefully will provide information about conditions Rudy DOESN’T have. We’ll keep you updated. For today, though, he’s sprinting 3-hour sprints and doing well in our absence. Thank you, dear ones, for your prayers!

Out of the Mouths of Babes!

rudy 2-2-09 Seeing Rudy intubated again reminds me of the question one of Livy’s fellow Brownies asked me at our last Girl Scout troop meeting. I wear a button with Rudy’s picture each day and at our last troop meeting, one of the girls stared at my button throughout the entire meeting. As we were saying goodbye, she finally came up to me with a concerned look on her face and asked, “Why do you tape your baby’s mouth shut?”. I took a second look at my button and SHE’S RIGHT – it does look like his mouth is taped shut!!! Oh my goodness, I’m so glad she asked for an explanation before going home to tell her family that troop leader Trish abuses her baby!

I arrived back at UCLA late yesterday afternoon and quickly scooped Rudy up for a good hold before he had to have his next respiratory treatment. Eventhough he was intubated again, I was relieved to see him relaxed and breathing comfortably in my arms. He had a day of rest yesterday but started sprints again today (see video below). There’s really no telling how long he’ll be on the ventilator this time but he cruised through his first two-hour sprint and today’s chest xray looks good so we’re headed in the right direction. There is question about the fever he has had for the past couple of days…tests have been conducted and there isn’t any sign of new infection so we’re not sure what’s causing the fever…a bit problematic for Rudy as the fevers seem to get him agitated which then effects his breathing. The Infectious Disease people are being called back in to consult so we’ll see.

Rudy is scheduled to take a little trip to Interventional Radiology tomorrow for the insertion of an NJ tube through his nose to his intestines. The hope is to start feeding him again through this tube but no specific timeline has been established. All in all, I feel Rudy is in a stable place…having to put him back on the vent was a discouragement, naturally, but all part of the “big picture” process and we simply need to regroup and readjust expectations once again.

This is a big week…Rolf and I are heading up to the Bay Area tomorrow for dear Rixie’s memorial service. Neither of us will be with Rudy for 4 days…the longest we’ve gone ever. Although Rudy and the other kids in Santa Barbara will be in great hands, it is unsettling to leave everyone behind. Please pray that Rudy will thrive and that Wilson, Max & Olivia will have a blast in our absence. Rolf is officiating the service and I’ll be singing so please pray for focus and composure as we turn our attention toward a very special life to celebrated.

Rudy’s wild hair is starting to curl…maybe he’ll have ringlets like his oldest brother Wilson! It’s fun to see noticable changes like that that prove he is growing…more and more undeniably ours. Strangely comforting while in the midst of a process that leaves me feeling disconnected from Rudy at times.

Rudy’s World Wide Web of Love

Re-intubating Rudy yesterday made for an immediately noticeable change. His lungs inflated more, his color changed and his oxygen sats went up to where they needed to be. While he always seemed a bit rigid to me on the vent previously, this morning he was moving around and taking an interest in toys as I held them up over his head. He spiked a fever today, so we’re on infection watch (nothing new). His kidney function seems to be coming back nicely—we’ve come to see that his kidneys are very resilient and bounce back if the team catches it quickly. He’s been receiving IPV treatments every 3 hours where a percussive machine puffs air into his lungs rapidly to expand them and loosen up secretions. We’ll keep on this course of action for the next few days and see how it looks to give Rudy another chance off the ventilator when all the conditions align.

I stayed with Rudy through early afternoon and then hustled home to switch places with Trish and enjoy the Springsteen Bowl with my boys. Great game to boot. Not much of a gambler, but I took Bruce on the over and made a killing.

This is a harrowing journey with more turns and reverses than one would want; but not without touches of grace and fun reminders of God’s hand. Amidst the breaks in progress for Rudy, we were tickled three times by three unique discoveries this weekend from among the Rudy’s Beat family:

Saturday I was chatting with Nurse Denise and we made a connection that we both once lived in Tujunga. As we shared our memories of the community, things understandably turned to where in town we lived and our descriptions of nearby streets and landmarks kept having more and more in common until we determined that we lived in the SAME HOUSE!!. She rented it in 1976 and we bought it almost 30 years later! Too funny!

I don’t think they make four-year olds cuter than Kelly and I’m so glad her parents, Mark and Mary, came from the room two doors down to introduce themselves as they were being discharged after a short stay. It’s always nice to connect with more members of the ICU Parent Tribe who know what it’s like to have your newborn in the ICU for several months. Even better when it’s a story told in past tense and you can look down and see a happy girl riding in a wagon down the hallway. As Kelly needed a follow-up operation on her heart, Mark and Mary set out to do some research on Brian Reemtsen, came across the Beat, and have been part of Rudy’s following. So glad they are on their way and their experience with the team here was consistent with ours. Thanks for stopping by, friends.

Speaking of the parent tribe, avid readers might have noticed in the comments that one of the Rudy’s Beat family spotted our friend Alan Manning in the Minneapolis airport. Sorry if it was alarming, Alan; within any following there comes the occasional stalker. Allison, remember what the nice people in the white coats told you about giving people their space. Just because Chandler and Monica are “on Friends”, doesn’t mean they are “your friends.” Think of the internet the same way. Keep your distance and stay in state—we don’t want another one of those ankle bracelets, do we? Alan, I don’t think you’re in any danger, but count your socks—she has this thing about sneaking in and taking them.

While it’s clear none of these connections would have been made without the presenting issue, I hope everyone forgives me if I don’t say that they make the ordeal worth it. Rudy’s stricken with something awful and I wish it wasn’t so, but I am grateful that within the struggle there are uncanny connections that make us laugh; reminding us that we are not left to navigate this alone but in a community we never expected. Thanks for being a part of it.