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’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.

The Vent Blows.

The ventilator totally blows–literally and figuratively. There have been some bumps over the last couple of days some of which led to Rudy getting put back on the vent late this afternoon. This morning began with a likely unrelated concern over his kidneys as some of the blood pressure and antibiotic meds impeded their function. Late yesterday, the team started him on Lasix and his renal function has steadily been returning. We’ve learned his kidneys are hearty and resilient and they’re proving to live up to their reputation once again.

The team has naturally been watching his breathing very closely and grew increasingly concerned with the way his right lung looked on Xray. They did an ultrasound which ruled out a return of the dreaded chylothorax, but that made it clear that there was an accumulation of mucus in his right lung. Over several hours, they noticed he wasn’t able to cough much (which would clear the lungs) and appeared only able to derive benefit from one lung (which caused his oxygen saturation to fall lower than acceptable.) While we could have waited things out longer, Dr. Robert felt it best to address the situation now rather than face a distress scenario later on.

Putting Rudy back on the vent allows the team to expand the lungs fully and effectively suction out the lung. His time back on the vent could be relatively brief (we’ve come to expect this to mean a few days) so please pray to that end—that Rudy would have a good rest and that the treatments would help the lungs expand and function properly. It’s tough to see Rudy have to be re-intubated after such a long stretch off the ventilator, but we have gained the knowledge from this week that Rudy can breathe on his own—there are no physiological issues limiting his lung function. While here waiting for the relatively brief intubation procedure to be done, I just got a call from the unit that Dr. Robert decided to place an arterial line in Rudy so they could get accurate readings on blood pressure and saturation levels. As it’s getting to be 6:30, it looks like I’m going to have another one of those pre-occupied dinners.

So the burden of waiting patiently is still ours. I’ve wondered some about what it must be like for Rudy—to lie there patiently during the early months of life when babies are probably held more than not. Holding him at any time is great, but there’s a rigidness about him when he’s intubated that greatly diminishes the cuddling one can do. Fortunately, it took one of the necessary people for the re-intubation a while to get to the unit after they paged him, so I took the time to pick up Rudy once more and stood there holding him up against my chest for half an hour. His little hands clenched onto my shirt and I felt his breath against my chest as his lungs worked back and forth. I kissed his head and prayed that God would somehow extend the impact longer than the actual act. I want him to know that this is what it means to be with Mommy and Daddy. We’re not just two faces that come into focus more often than the others around the bedside. I want him to feel the vibration of my voice from having his head against my chest instead of just hearing my words coming through the white noise of the ventilator. It hurt to put him down, but my prayer as I did was that the feelings of being close to us this week would summon the instinct to fight his way quickly back for more.

Just to remind us all that this is temporary, here’s a couple of pictures and a video from the special moments these last few days. We’ll look forward to many more!

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Quick Update: Re-gaining Ground

At 5:30, I called Nurse Amy just as I was getting off the freeway here at home and she reported that Rudy was doing fine since I left. The fever was no longer a concern and he was just gliding down the home stretch of a two hour sprint. So, there’s been a delay but we’re bouncing back nicely. Here’s praying for more progress tomorrow.

I just checked out the Manning’s blog entry about their visit this weekend and think it’ s pretty cool. Peace out, homies!

Afternoon calm in the wake of a rocky morning

It’s coming up on three and it looks like Rudy is close to a place where I can leave him to head back to Santa Barbara to switch places with Trish. Rudy had a fitful morning running a fever due to the infection he’s been fighting. It took awhile for all of the necessary measures to take effect, but for the last couple of hours he’s been resting comfortably with good rates for his heart and breathing. The fever is coming down, so hopefully we’ll be able to do a sprint or two this afternoon. It’s hard to endure a setback. We’re far from square one, but this journey is fraught with letdowns over progress not attained. It would be dishonest to say it’s not discouraging.

As frustrating as my morning was, it was overshadowed by the commotion on the unit. We had a very sick little patient come in that brought a flurry of activity like I’ve never seen before. About twenty staff, many of them rushing in with equipment–each piece scarier than the last. It went on for about three hours during which I tried as hard as I could not to make glances down the hallway, but there were two parents standing there shell-shocked at their introduction to the world of the ICU. As they were too concerned for their child and loaded with adrenaline to display any of their own emotion, I did a little crying for them in my own room. On the one hand, so grateful it’s not my kid this time, but still I wish it wasn’t anyone else’s.

The dreadful carts have been moved back to their places and are being made ready for the next time someone needs to run for them. I just saw the parents walk out crying, but a quick check past the room indicates they were tears shed over what their child has to face and not over a battle lost. Grace and peace be over this place and on the little fighters here.

Going for the jugular…

It’s been awhile since we were the busy room in the unit. Unfortunately, that changed today. Rudy made it through the first of his three hour sprints in the early morning before I even got to his room. From 11 on, he started to get more and more fussy (with a high heart rate and breathing) and the usual steps to calm him down (holding him, changing positions, suction, rescue doses of sedatives) didn’t change things much over a four-hour span. While the team worked to eliminate possible causes, things became clear when his temperature spiked and his blood gases indicated he was headed toward acidosis. The infection we’ve been monitoring in the picc line was now presenting itself as something that needed to be reckoned with. Remarkable how quickly things can change—the same tests gave no indication of anything being amiss just hours earlier.

Just after 3pm I signed consent forms and left the room so the team could insert a new picc line. One of the reasons why the team didn’t just pull the line out of his arm right away was the simple fact that they are running out of sites to start lines on Rudy’s little body. This turned out to be all too true as they started trying to insert into Rudy’s groin. When that didn’t work, they tried to put a subclavian line in his chest. Two hours into my exile from the room, I was called asking to give consent for them to go through the neck into the jugular vein if chest insertion wasn’t possible.

So I set out on what turned out to be five hours of trying to keep myself busy. There’s a surreal feeling to the times where we have to leave Rudy for a procedure. If it doesn’t last longer than they say it’s going to it always feels that way. All I really wanted to do was curl up on a couch somewhere with a quart of Ben and Jerry’s, but I decided to take a walk around campus (OK, I did get an ice cream cone to safely offset any calories I might have burned). Turned out to be quite a long walk, but most of my exertion was directed toward not checking my phone every 30 seconds. About the time I thought it would be smart to get an early dinner while I couldn’t be in the room anyway, I got that call about consent to go for Rudy’s jugular. On hanging up, I found myself in another one of those surreal moments of uncomfortable weirdness—“Yes, go ahead and stick my son in the neck. Now, do I want Thai or a burrito?” Pretty good food, but not much enjoyment.

I walked back to the hospital a bit frustrated by how familiar this whole place and routine are. I know the stains on the sidewalk. I know it’s around shift change so I headed to the West elevator because the East gets crowded. I recognize too many of the faces coming in and out of the building. I saw a couple of nurses from labor and delivery and walked the other way as I just didn’t feel up to elaborating on why we’re still in the hospital 16 weeks after our encounter with them. I set up in one of the weird little lounges on the floor waiting for the call from the unit and pondered what decorator decided that pictures of polar bears would go well alongside the Great Wall of China mural (once again, at a moment when I’m not able to focus much on anything else—it’s polar bears again).

I got back to Rudy around 8:30pm and he was resting comfortably with the line in his neck and the suspect one gone from his arm. Dr. Robert still feels very good about where he is, but put a hold on extubating tomorrow. That really bums us out. We were so close—and still are, but wisdom would dictate that Rudy have at least a day of rest since this afternoon unfolded into more of an ordeal.

At long last it’s quiet here in Rudy’s room and I’ll just sit here with him for awhile as Nurse Betty keeps an eye on everything with her trademark quiet efficiency. Weary? You bet, but tomorrow’s another day and we’ll look to get back on track. Please pray with hope for Rudy—that he’d get good rest and be strong to move off the vent this week and that, now that the picc line has been changed, this bout with infection is safely behind us.

Strong and Steady

Today was an eventful day. Trish and I drove down from Santa Barbara with Grandpa Dick and Grandma Jo and swung by the hospital for a quick visit before seeing them off at LAX. They enjoyed a chance to hold Rudy and say goodbye.

Our little warrior keeps making progress on his breathing. Today’s plan was for three 3-hour sprints. He made it through the first one effortlessly, but was a bit riled up on the second so we had to cut that one off halfway through. Perhaps our presence can make him a little bit agitated and it can take some intervention to get him calmed down. As I write this he’s got about 45 minutes left on his 3^rd sprint so Trish and I are sitting here calmly and he’s cruising on through it without much fuss. The plan is to give him one more day of exercise tomorrow with three-hour sprints and then pull the tube on Monday. So, please pray for continued strength for Rudy leading up to that so he can successfully transition off the ventilator.

The team is continuing to take blood samples for bacterial cultures each day. One set from two days ago started to show a little growth so Dr. Robert has changed up some of the antibiotics to stay on top of that. Infections come with the territory with extended ICU situations so we’re not overly concerned at this point as Rudy is not showing extreme symptoms, but please pray that the steps the team is taking would hold things at bay.

All this brings me to the major highlight of the day (if not the week). We were visited today by Alan and Vickie Manning. Followers of Rudy’s Beat are likely aware of their journey (click here for their blog). As we have drawn such comfort from reading their blog and exchanging e-mails, it was very emotional to meet them. There was much to talk about and probably even more that didn’t need to be said. Alan and Vickie are heroes to us as they’ve come face-to-face with the same monster and know the lay of the battlefield. They’ve been pushed to a place of having to make the most difficult decisions parents need to make and know that even the most excellent medical care can’t fix everything.

The five hours together flew by so quickly. Faced with a condition that strikes only 3 out of every 10,000 kids, it was a comfort to be together with people who spoke our language. We laughed over our parallel experiences in ICUs at opposite sides of the country. It might only be a small minority of people who have spent enough time in such places to find the humor therein—the rest of the population is often rightfully terrified. Thank you, Alan and Vickie, for your courage and perspective; we are grateful for your friendship and encouragement. When speaking of Katie’s passing, one thinks instantly of your loss—but I also come away grieving what Katie lost in only having you as parents for such a short time.

Good progress while we’re away

Nurse Amy rocks!!! Actually, all of Rudy’s nurses rock, but she’s the one that’s there today. We kept in touch with her by phone and she reported that Rudy made it through 2 hour sprints today without any trouble at all. Perhaps he was a bit starved for attention because he got really fussy and nothing Amy could do seemed to calm him down until she decided to hold him–and did so for three hours! That made our little charmer a pretty happy camper.

This is very encouraging progress and it has Dr. Robert charting a course for extubating in a matter of days. The team has kept an eye on Rudy from an infection standpoint and the cultures aren’t returning much of significance, nor are there symptoms that seem to be holding him back. He looks strong and capable, so the plan is for Rudy to move to three 3-hour sprints tomorrow. Depending on how it goes, they could pull the tube on Sunday or Monday. Please keep praying–we have to be prepared for twists and turns yet to come, but it sure would be great to get past the vent.

In the meantime, we’ve enjoyed our final evening with Grandma and Grandpa before we see them off tomorrow. While I worked today, Trish found the time to lunch with them down at Beachside Cafe (but I’m not jealous…really I’m not–the Clif bar I had at my desk was soooooooo tasty). I got my fill tonight as we grilled steaks in the rain to console Dick and JoAn after besting them at Pinochle. It was all topped off by a visit from two raccoons just now who were either quarrelling or amorous, but clearly not in a rush or bothered by humans nearby. Just part of life in the wild here in Goleta.

As you can tell, our spirits are up. Can’t wait to see Rudy tomorrow!

In case you wanted to see the bath right side up…

Several people have gotten cricks in their neck from watching the bath video. Thanks to our pal Joey, this has been recitified. Go back to the Bubble Bath Post, and enjoy!