Actually forget about TV, I’ve seen a lot more doctors in person. The steps taken by the team this week made for a markedly different weekend with Rudy. The tracheostomy has helped Rudy with breathing on his own. As I mentioned in Saturday’s post, the team was going to give Rudy a couple of stints off the vent for two hours to see how he did. He did so well on the first two and actually got pretty agitated when we put him back on the vent (Oscar says that patients sometimes don’t like the feeling of pressure from the machine if they’ve gotten comfortable without it). So, we added a third on Saturday evening and since he wasn’t exhibiting any discomfort when I had to retire for the evening, they just decided to let him stay off. The team attempted to put him back on the vent in the early morning hours and he again expressed his displeasure, so they just decided to leave him off. And he’s been breathing on his own ever since. Go Rudy!
Even though we aren’t at the point of crafting a timeline for going home, during Sunday morning rounds, Dr. Rick said he wants us to start our education in what Rudy will need when he’s at home. Again, no specific dates are in sight, but it would be unfortunate to have any delays because of our training. So, it started yesterday with Nurses Jennifer and Gloria training me in how to suction out the trach. It’s not that hard and I must be doing it right because Rudy hates it just as much as when the professionals do it. It might make one a bit queasy, but largely because it’s unfamiliar. If Trish wants to do all the diapers, I’ll do all the suctioning.
We enjoyed the Monday holiday together with our other kids–simply being able to stay in bed while rain drummed on the roof was a great start. Trish is headed back to UCLA as I write this and the kids and I will enjoy some yummy chili tonight’s food fairy brought to our porch (thanks!) before getting ready for the week. We’ll be interested to hear the plan for Rudy’s stomache when the full team rounds in the morning.
After the week Rudy had, I was eager to get back to UCLA to see him. We’ve written before how it’s usually much harder to be the parent in Santa Barbara than at the hospital when significant procedures are going down, so there were several people who encountered me this week who made mention of the fact that I appeared distracted. There’s no denying that a trach takes some getting used to, but when viewed in terms of all the other things Rudy’s had sticking out of him, it can be taken in stride. It is neat to see his face with only the small tape holding the NG tube in place instead of the vent wrap. Without the hoses coming out of his mouth, he can move around quite a bit more, so we’ve enjoyed making eye contact and having fun today. He sat on my lap for about four hours this afternoon and things were calm enough to the point where we wondered aloud how Stanford could blow a 20-point lead and lose to Cal–ugh.
Rudy had two stretches off the vent today totaling close to five hours. He does this with a small oxygen hose pumping some vapor around the hole as his breath doesn’t get the normal humidity we get from breathing through our upper airways, where saliva creates humidity. (Betcha didn’t know that–who needs the Discovery Channel when you have Rudy’s Beat?) He got really mad at RT Oscar when he came to put him back on the vent, so I think he’s ready for more.
We did have a consult from Dr. Dunn, the Pediatric Surgeon who is going to be addressing Rudy’s stomache issues. I’ve spent much time educating myself on cardiac and respiratory issues, but I don’t know yet how to speak Gastro-Intestinal, so that’s tonight’s internet lesson. The imagery reports we got yesterday indicated that Rudy’s stomache is a bit more horizontal than normal and also has some reflux issues, but there was comfort in Dr. Dunn’s assessment that these were common issues for cardiac babies. A number of big words were introduced to me which Nurse Amy has been kind enough to repeat several times so I know where to start my education. It’s looking like Rudy will have surgery on Wednesday where some of this might be addressed and a GJ tube placed–the team will confer on the appropriate game plan in the meantime.
Many procedures have been attempted on Rudy, but today Nurse Amy attempted the most daunting yet. She came back from her lunch break with hair product and great intentions to try to tame his mane. It worked quite well for a bit but I don’t think they’ve created a substance with holding power sufficient to keep things in check. A couple hours later he looked like Heat Miser again. But Amy should be applauded, because somewhere in the middle of all the primping, Rudy did seem pleased and I was able to snap a picture we’ve been waiting quite some time for:
Though we see only the highest professionalism in the CTICU, given that our son’s care is in their hands we do our best not to upset them. In light of this, we have corrected a previous post that spoke of RT Oscar e-mailing us pictures of Rudy breathing. It was in fact Nurse Denise, who might have been less offended by the omission than by the assumption that someone of her generation would not be able to master such technology. We are so sorry. Thank you for your thoughtfulness, Nurse Denise. I’ll call you the next time I have a problem with my computer.
While we’re appreciating our Nurse friends, we have adopted a practice of decorating Rudy’s room for the holidays we’ve spent here at UCLA. Knowing Trish, Valentine’s Day would not have been an exception, save for the fact that we entered at the start of the week to find it already adorned with streamers of hearts and red garland. We’ve since determined that Nurse Kelly was the elf responsible. Thanks, Kelly! Rudy loves his room!
Rudy couldn't come, but we brought him a souvenier!
As Trish already mentioned, our weekend was a bit surreal. Olivia, Wilson and Max got a huge morale boost by our two days at Disneyland/California Adventure. It was cold and rainy enough that we had to seek shelter a few times, but it also served to keep the crowds away. We watched the kids get lost in the experience, laugh and have fun, try some new risky things (like Olivia and Space Mountain) and come away thrilled. I found myself trying to learn how to feel two very conflicting emotions at the same time; sharing the joy of the kids’ experience while feeling burdened and heavy for Rudy and the struggles we knew he was having over the weekend. It brought us again to a place of feeling very torn–we have a baby in ICU and it kills us to not be there, but in front of us there were three kids who were finally getting some respite from months of upheaval who need us just as much as Rudy does. So I often found myself in a bit of a stupor–loving the fact that my kids were care-free and bouncing around with smiles on their faces, yet troubled that I have a baby in critical health and I’m at an amusement park. Wish there was a guidebook for such things.
Rudy was on a rollercoaster of a different kind and we’re so glad that Oma was keeping an eye on things at the hospital for us. On our way back from Anaheim, we stopped at the hospital to pick her up and drop off Trish. While there we had a long check in with Dr. Rick which brought us back to reality a bit quicker than we may have hoped. This week, there are three items on the agenda for Rudy: A tracheostomy, a gastro-intestinal consult, and a neurological exam.
None of the three terms seem all that warm to us, least of all the first. Rudy has had two very solid attempts at breathing on his own and was not able to maintain things without the accumulation of mucus in his lungs. As all of the conditions were seemingly right for these two attempts, there isn’t much reason to believe trying again in a few days or a few weeks will bring a different result. On top of this, re-intubation is a disruptive procedure which has been shown to negatively impact Rudy’s heart rate, so having a port in his neck to breathe from can give the team more options with the ventilator and allow them to suction the lungs more effectively. It’s obviously an option one hopes not to take, but it is viewed as temporary–as patients grow bigger and stronger they are able to eventually breathe normally. As it turns out, the ENT specialist Rick contacted today and really wants to involve happens to have an open OR window tomorrow (Tuesday) morning at 10, s0 we gave consent to go ahead with this procedure. As part of the process, they do check the trachea and lungs very carefully just to see if there is some kid of physical obstruction which may be causing problems, but Rick isn’t expecting them to find much. We should be prepared for the tracheostomy.
The team is also going to look closely at Rudy’s stomache function as he has had difficulty with every attempt to feed him thusfar. As we spent most of our discussion on the topic above, we’re not sure all that’s involved here, but they do need to get some specialized input on what might be going on here.
Lastly, Rick wants some good imagery done on Rudy’s brain mostly because there is no good explanation yet for the consistent fevers he has. We want to be sure there isn’t any kind of abscess in his brain that might be hiding somewhere. There’s not much evidence of neurological issues with Rudy, other than a tendency he has of looking to his left more than the right–but this could might be more out of habit.
Three pretty big things to grapple with and we were grateful for Rick’s forthrightness and care in explaining them to us. We trust this team and their commitment to Rudy and our family. Very little is known about HLHS and why it strikes, but so far there is no link drawn between it and the incidence of other conditions. From my layman’s perspective, the same steps needed to correct this heart lesion also inflict trauma on a delicate little newborn body. Recovering from them presents quite a challenge. Most readers would have to wonder if we’re going to extreme means to help a little boy who can’t breathe or eat and, having discussed this with Dr. Robert, I took the opportunity to ask Dr. Rick. It’s a conversation you can’t quite believe you’re having about your child, but the assurances we have from both of them are that their plan for treatment still views Rudy’s issues as surmountable and that he will move beyond them. So we cling to that amidst twists and turns on a rollercoaster scarier than we’d ever dreamed.
Please pray for Rudy on Tuesday at 10am PDT as he’ll be in surgery. Trish will be on hand and will post updates accordingly during the day.
I promised that I would post audio clips of Trish singing at Uncle Rixie’s memorial service on Wednesday up at Stanford (thanks for the help, Greg). Life has been such a blur and is at times so overflowing with the emotions of this journey that it wasn’t really until about Friday that some of the reality of Uncle Rixie not being with us anymore sunk in. So, while it might be a bit off-topic for this blog, I’m including the eulogy I gave at the end of the service after six others had captured him so well with their tributes. Rudy is understandably the focus of so much of our emotional energy right now, but I don’t want the passing of someone so significant to get lost in the blur.
The audio tracks might take a few seconds to buffer, but wait and enjoy. It’s worth noting that Trish sung these without a mic–the acoustics of that place were amazing!
It is Well with My Soul
All people That on Earth do Dwell
I am so grateful for the way those who have shared have remembered important spheres of Rixie’s life with such vividness and warmth.We were planning this service and thinking about how special it was to have it in this church on this campus that Rixie loved so dearly, and now having sat through it, I can’t help but think how much Rixie would have loved to be here in person.Like no one else, he would have received these tributes with such graciousness and quiet pride.In his own trademark way, he would have made each of us feel like we were the person he was most honored to have in attendance.
Rixie was unique in that he was so consistent.We have a tendency to take on different personas as we move from realms of public and private, but whether he was with close friends, family or interacting at some of the highest levels of academia, Rixie was always his winsome and endearing self.He endeared himself to people of great importance, but also to people of more modest station—like students, secretaries and some very fortunate kids.In 1947, my father was one such student and I became one of those fortunate kids.Rixie and Elliott became surrogate grandparents who brought joy and creativity into our lives.
·At one of the first meetings I can remember when I was about five years old, I proudly entered our living room in my cowboy outfit and greeted Rixie with a “Howdy, Pardner!”From then on, he decided we should adopt the monikers of “Big Pardner” and “Little Pardner”; which is how we addressed each other regularly for the rest of his life.
·Around the time I was eight, I had just gotten my first pack of football cards and was showing them to Rixie.He was immediately concerned that I did not have any players that had graduated from Stanford, so the next morning he asked my mom to drop us off at Woolworth so we could get a couple of packs of ten.We ripped open the packs out on the sidewalk and found no Stanford graduates.So Rixie kept sending me in with quarter after quarter until we had bought at least a dozen packs and got us a Bob Moore and a Jim Plunkett—not to mention six sticks of gum each that we put in our mouths all at the same time and sat on the curb chewing until Mom came back to pick us up.
·While I know Stanford gave Rixie an office for other reasons, to me it was where he went to write me letters and I always got excited when I got something in the mail from my penpal at Bowman Alumni House.His letters were always creative and they forced me to be the same—at first it was Big Pardner writing to Lil Pardner about life on the trail, but after a few years we started publishing newspapers—his was the “Governor’s Gazette” and mine was the “Post House Packet” and we exchanged our information via articles in our newspapers.I remember there were items about what the fruit trees were producing in the garden on Governor’s Lane; travel reports from the Danube or the Delta Queen; the sports section was devoted exclusively to Stanford sports and the editorial page usually included some erudite diatribe about Cal.
·As my grandparents lived overseas or were deceased, Rixie was attentive to me and invested in me over my lifetime like few grandfathers would have.He encouraged me and I suspect would have been supportive of any course I chose, but there was probably some subtle coaxing in the Stanford t-shirts I would get for every birthday and Christmas.
·Rixie said I got into Stanford on my own, but as wonderful as I may have been, I suspect it was hard for Dean Fetter to overlook the letter from a certain predecessor that got attached to my application.And in my years on the campus, I always looked forward to Tuesday nights when the orange Rabbit would pull up in front of my dorm and Rixie would take me out to dinner just like he had taken out my father 40 years before.
In his own understated way, Rixie was very proud to live one hundred years.He saw a lot of things and was able to remember astounding details about people, places and events and, as a historian, was able to provide context so that you came away feeling much smarter than you actually were.Rixie and I were tickled during one of our last conversations over the fact that he was retired almost all of my life.But that doesn’t mean he stopped being a professor; he may not have been grading papers or giving lectures, but he never stopped teaching.
The text Rixie asked that Schaff read from the Apostle Paul (ICor13) elaborates profoundly on the concept of love.They say that one can have a full life, rich with experiences and possessions, but without love there is emptiness.Rixie was a loving person and if we look at his life, he gave us profound lessons about love:
·He taught us that a deep love of people can reward one with an expansive and close extended family even if one hasn’t any biological children.
·He taught us that love—expressed in interest, genuine concern and warmth—turns co-workers and colleagues into lifelong friends.
·He taught us that love, in the form of diligence, wisdom and service, can be the bedrock of a tremendously successful and visionary career.
·He taught us that love, manifest as winsomeness and warmth, can actually be more effective in influencing people than brashness and assertiveness ever could.
·He taught us love, lived out in a lifelong devotion to an institution, can and will continue to impact thousands in ways unimaginable for years to come.
The professor never stopped teaching, my hope is that I’ll be a good student and never stop living out what we’ve learned from him.
We got a voicemail from Dr. Dan this evening telling us how great Rudy looks off the ventilator and, if we didn’t already know it, that we have a tough little guy. My phone conversation with Dr. Robert this evening confirmed that and gave more detail on the events of the day. I guess I was a bit off in my previous post in that, while the team was planning on taking out the tube within the hour, Rudy got it out himself about 30 minutes ahead of time. It needs to be in just the right place and only a few centimeters can shift it out of place, something he was able to accomplish with his tongue and swallowing muscles. Dr. Brian claims to have checked in on Rudy early this morning and told him to get rid of the tube, so I guess he was just being a good patient.
What makes us very glad right now is that the team is very encouraged by how good Rudy looks. He’s breathing in the low 20s with saturations in the high 70s. While he does get a bit agitated, he is able to calm himself down with the pacifier. This has reportedly presented a problem of ingenuity in the CTICU, where they have gadgets that can probe just about every part of the body through any chosen orefice, but no appropriate technology for keeping an infant’s pacifier engaged. Dr. Robert reports that quite a few innovative attempts have been made with various tubing and tape contraptions, but most of the time it requires a highly trained human index finger to hold it in place. Hold on, everyone–we’ll be there shortly.
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!
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.
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 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!
Rudy's Beat 