While it’s not the celebration we envisioned (but then neither have most holidays of late), our family sure is excited about Trish’s birthday. As Trish does a pretty good job keeping vanity at bay, she didn’t let on that one of the highlights this week was a birthday makeover. There’s a kind organization that comes into the hospital to take portraits of kids and their mommies, so Trish got to join in the fun! The final result is stunning!
She told me that our plans for the weekend have changed. Tonight she wants to sit on her bed, eat Pop Rocks and gaze longingly at her Karate Kid poster while listening to Sheena Easton 8 tracks. She’ll need to get some rest because she was a troublemaker and has to spend all Saturday in the school library with Emilio, Molly, Ally, Judd and Anthony so that they can achieve teenage enlightenment and discover that they, as middle class suburban white kids, are remarkably all the same (who would have guessed?)
OK, that wasn’t the picture. Here’s the one from this week’s makeover:
About three times the years, but ten times the HOT! My birthday princess is looking fine!
While I’m posting and boasting, Wilson had a great week as well representing La Patera Elementary at the County Spelling Bee. His goal was to make it past the first round as he missed the cut last year, and he was successful. About 150 started and he finished somewhere among the final 20. As we didn’t have a lot of time to study, our strategy included preparation in some of the terms that have become part of our family vernacular but would likely elude the common elementary speller. Unfortunately the gambit failed as “hypoplastic”, “cardiothoracic”, “pleurodesis”, and “fundoplication” were not on the word list. Too bad, Wilson was going to nail those!
Yesterday evening, as the ICU and surgery teams were working out their schedules, they ended up taking Rudy off the list as they had to prioritize other cases. They would work to add him in if there were any cancellations, but I found it tough to hope and pray for that as surgeries like this don’t usually get cancelled because the patients heal themselves. As crazy as we are about our own little patient, we need to keep in view that this is a hospital full of sick kids and the team has to make choices. A member of the surgery team just came in about an hour ago to tell me personally that it wasn’t going to be today. So, right now Rudy is the second case on Wednesday.
As the team rounded today, Dr. Rick decided to do something about the vent as Rudy got put back on late last week so that he’d be fit for surgery Friday and then continued on in case it would happen today. So, we’ve been dialing things around a bit to give him some exercise. After five days on support, taking him off cold turkey was a bit too much, so now we have him on pressure support only and he’s been sitting on my lap for about four hours peacefully napping or studying his surroundings.
Trish is on the way down so we can switch up this afternoon.
Again a pretty calm day here with very little to report. Livy and I enjoyed our weekend together and we were especially encouraged by a number of visitors. Rudy has been very calm today and his numbers look good. While he had a little fussy spell this morning (what baby doesn’t), he’s settled down for the rest of it so we haven’t messed with him much. At some point this afternoon, we must have shifted his position a bit because the nurses and I have now gotten a taste for the recurring vent alarm that made Trish contemplate making an adjustment to the machine with a shotgun.
Livy and I had a fun time hanging out with Rudy. She took a break from playing with nurses to play in the hospital playroom and we enjoyed two meals at her favorite place (Socko’s Subs). While we were planning on driving back together about now, as the plan for Monday isn’t clear, I’m staying around for at least the evening (if not the night). So, our friends Bob and Janet were kind enough to take along a weepy passenger on their way back to SB from Oceanside.
As it stands now, Rudy is on the surgery schedule for 10am tomorrow (Monday). No infection has presented itself so right now there’s nothing in his condition that is changing plans. Perhaps one of the other cases they mentioned to us will still show up to bump us from the schedule, but as far as Dr. Lee could determine, he’s on the schedule so until we hear different that’s the plan. If surgery’s on, I’ll stick around and we’ll be keeping you posted in any case.
Not much to report today (I guess that’s a good thing), but I’ll give a quick status.
We had a fun evening together with the older kids enjoying some fine entertainment at the La Patera Elementary School Talent Show. Fun to see and be seen! This morning, Livy and I made the trip down to relieve Oma at Rudy’s bedside. Livy had raised a protest over the fact that she hasn’t had the opportunity to come down to see Rudy and spend the night, so this is her chance. She’s spending as much time in the room as outside of it as there’s now a new group of nurses to charm here on the PICU side in addition to keeping up with her CTICU friends on the other side.
Rudy has had some struggles today. The fussiness and the occasional fever spike have come to mark the onset of an infection, so that’s being monitored carefully and we’ll wait to see what the cultures bring back. He did calm down by mid-afternoon and has had a few hours of comfortable rest.
We’ve been in contact with the GI surgical team and they are trying to arrange the surgical calendar. While everyone would like to get Rudy on the calendar for Monday, there are some emergency cases that might take precedence. Of course, if an infection is discovered that might make the choice for us. So, another thing to wait on. We’ll let you know when we hear something.
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.
Rudy's Beat 