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!
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.
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.
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 3rd 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.
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!
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!
I got an iPhone this week. Does it make my life complete? No, but it might make me cooler than you (unless you bought the 16gig model). It’s a pretty nifty gizmo and Wilson kept himself and me entertained for most of the trip down from SB today as he tracked our progress by GPS and downloaded various applications. The most remarkable had to be the virtual whoopee cushion which has limitless permutations making for hours of fun. Turns out the whoopee cushion has universal appeal as Wilson has wowed just about every staff member who’s come in to see Rudy–regardless of how many degrees they have. I think it’s some welcome comic relief as there’s an intense vibe here tonight–a full unit wtih lots of very sick kids.
We were encouraged to see Rudy and to hear a good report from Dr. Rick about his condition. He’s very alert for long stretches as he’s only getting small doses of methadone twice a day. Everyone has had a chance to evaluate the CT scan and subsequent Xrays and Rudy’s chest looks very clear. Based on that, feeds to Rudy’s tummy were started yesterday. He keeps holding his ground on the vent and is making slow progress (it’s currently at 14bpm; pressure support of 11). Both Wilson and I got chances to hold him, but mine featured a nice soaking of Rudy vomit during one of his percussive respiratory treatments. The team took him off feeds for a bit, but then surmised that it was more along the lines of what babies do when they get shaken with a full tummy. So, I lay claim to a first in Rudy’s life–the first parent to get spit up on!!!!
Dr. Brian stopped by this evening and confirmed Dr. Rick’s report. Everyone is very positive about where Rudy is–he is stable and holding good ground. Hopefully the changes to his nutrition will push him over the final hump to get off the vent–he’s so close.
I think he’s really glad to have his biggest brother here. Wilson has been great holding him, talking to him and reading to him. I’m glad Wilson came with me. He’s good company, just as long as I get my share of turns with the whoopee cushion.
I’ve written of the due diligence we did upon learning of Rudy’s diagnosis in utero. To receive a diagnosis of Hypoplastic Left Heart Syndrome was to find ourselves in a scramble to get conversant in a world we previously knew nothing about. Within a short time, we knew enough to understand the importance of cardiologists and cardio-thoracic surgeons, but beyond that we barely knew what questions to ask. As we started to head in UCLA’s direction, a doctor friend here in Santa Barbara noted that it is a Level 1 Pediatric Trauma Center which means that it has the highest level of resources for dealing with kids in critical circumstances. I didn’t think much of it at the time, figuring it would be a given that UCLA would be among the more advanced hospitals in southern California. But beyond that, I didn’t know there were levels and that they stood for something.
I didn’t know there were doctors known as “Intensivists” who specialize in the care of critically ill patients. While Dr. Reemtsen is the quarterback of the team (Rudy is “his patient”) and he and the cardiologists track him with great care and are involved in every decision, it’s the Intensivists that never leave him. Attending Intensivists take charge for seven days at a time and are supported by Fellows who are present around the clock to keep watchful eyes on patients whose conditions don’t distinguish between waking and sleeping hours.
We’re not sure how rotations and schedules are set, but somehow Dr. Robert Kelly is one of two attendings who have pulled the majority of the shifts while Rudy has been in the CTICU. In a place where the line between life and death is regularly skirted and parents are pitched about in the accompanying throes of emotion, Robert walks calmly and methodically; a man who’s found bedrock and, by virtue of the fact that he’s securely anchored there, can keep a steady course while we flail about.
On a Sunday early on we discovered a mutual love for the New York Giants which led us to discover that, we too, share roots in North Jersey. On the surface, Robert appears a straight arrow. I would suspect he’s always been one except that he attended the Catholic boys’ school my parents always threatened to send me to. Maybe there’s a sinister past we don’t know about that required Benedictine reforming.
Among other things, Robert’s calm demeanor in the CTICU comes from a base of knowledge and competence. A typical morning round at Rudy’s bedside is an introduction to a new language; a flood of terms, numbers and instructions (and I’m only listening to one patient’s worth). Everyone in the huddle tracks along and I try to nod knowingly with my most intelligent expression hoping I’ll remember the big words long enough for Robert to stop by. He understands them well enough to explain them to me and has the patience to do so multiple times if necessary.
Rudy’s situation is complex and patients in his condition do not follow a scripted course of treatment. It is a journey of debate and discovery and Robert is often a central player; secure in what he knows, but welcoming of other opinions; able to draw on a wealth of personal knowledge but also willing to research diligently. It’s navigated best by someone who is able to keep the patient clearly in view and desires to marshal any and all resources and expertise on their behalf. I’ve come to trust that Robert tends to be right most of the time, but love the fact that he cares less about this than Rudy getting what’s right.
Robert seems to be very aware of Rudy’s condition whether he’s on duty or not. More than once I’ve come across him somewhere in the hospital on an off week and it’s clear he stays as current on the charts as if he rounded with the team. It’s not like his “weeks off” from us are devoid of intensity as he spends most of them on duty with the transport team where the next phone call could see him rushing to the helicopter to bring in a child in critical need.
I’m always struck when Robert comes in to see Rudy as it’s a man about my size who fills the doorway. While my hands have been compared to Paleolithic tools, his go very gently over Rudy’s body and navigate deftly around the wounds, wires and tubes. The stethoscope is carefully cleaned to make sure it’s sterile, but also so it’s warmed and doesn’t startle Rudy. As he finishes up the exam, his eyes sweep the room from monitor to monitor and pump to pump. I’ve come to believe that he knows what just about every one of these numbers should be, but such things always bear verification.
It was observed that Robin Hood’s trusted sidekick, Little John, was anything but little. Not noted for the flamboyance of his leader, John’s reputation was that of a “stout, loyal fellow”, so I draw the parallel to Robert for reasons beyond physical stature. As a parent thrust into the world of the CTICU, flamboyance counts for very little, but stoutness and loyalty mean everything. Robert’s steadiness and unwavering commitment to Rudy, and thereby our family, are things we will be forever grateful for.
I think of Rudy alot, but for some reason I’ve found myself more fixated on his condition than usual. I’m glad someone as kind as Nurse Faye was with him today to pleasantly tolerate my check-ins by phone.
There’s good cause for encouragement. After giving Rudy a couple of days to rest at 16bpm, the team continued the weaning process. The pressure support is already as low as it needs to be, so this morning they stepped him down to 14bpm and he’s tolerated things fine all day. Only a few more steps to go (we pray)–the next one should come tomorrow morning and then we’ll see if they want to do some more sprints before extubation.
There was concern about the IV line going into Rudy’s groin as it didn’t seem secure. After some back and forth over replacement, adjustment, etc. the team decided to remove it today as he really doesn’t currently need anything more than the IV port in his arm right now. While we’re dealing with that area of the body, the team also removed the Foley catheter so he could just let loose into his diaper like all little boys should.
So this is progress: while Rudy is still hooked up to a few monitoring lines, other than the breathing and feeding tubes there’s only one line going into his body through one arm. Nurse Faye says that this means he’ll get to experience something for the first time tonight: A BUBBLE BATH!! As Trish is planning to drive down this evening, I requested they wait so that she can join in the fun.
Thanks for your prayers–this week is off to a good start!!!
Let me start out by apologizing to our dedicated Rudy’s Beat readers. We miss one day posting and start getting concerned e-mails. Thanks everyone for following our journey so closely. We had a full weekend and, as you read below, time in Rudy’s room isn’t as idle as it once was, so it was harder to get a post in.
As much as we want to be with Rudy every minute of the day, we’ve recognized that Olivia, Max and Wilson have needs as well. Part of this means giving them time with both of their parents together, so Trish got home Friday night in time for dinner with the men at the mission. We lazed around the house a bit on Saturday morning until we went to watch Max’s first basketball game of the season. Once that was done, I headed down to UCLA with Max as my sidekick as he said he was tired of weekends without Daddy. This ended up getting us there just before dinner, which was later than usual as several of the nurses and doctors reminded me on our arrival–I wonder what these dear people would do without us to entertain them. Of late, it seems that the unit has been very busy with lots of sick kids demanding long hours and attention from the staff. So we sit calmly in our room and are grateful that there hasn’t been much buzz around us lately. Always grateful for check-ins with staff when they stop by, but glad this isn’t driven by urgent needs for Rudy.
Rudy has been holding steady and the team is happy with his progress. As Trish reported, Rudy was getting tired with the sprints and vent drops, so Dr. Robert decided to let him rest on a plateau of sorts–16bpm and he held this well. It might feel like a bit of a letdown to stop the forward progress, but viewed in light of where Rudy was two weeks ago, it is a very different picture. He held at this level well for the last two days and even let the team turn down the pressure support a bit (technical details I won’t get into, but also steps toward breathing on his own). The chest Xrays are clear and the methadone has been turned further and further down to where he is very alert and interactive. The downside of this is that he now gets fussy (as babies do) and needs to be entertained. The only problem is we’re limited in many of the usual resources (carrying him, putting him in the swing, on his tummy, etc). So he lies on his back, waves his arms and kicks his feet, which can result in him getting tangled in some of his lines.
I got to hold him for long stretches last night and today and he really liked it. I was encouraged that twice today he got very agitated with his heart rate getting up near 200bpm, but we were able to calm him down without having to give him a rescue dose of sedatives or turn up the ventilator rate. Max and I showed up this morning ready to watch the game with chips, salsa and the works. Max got quite a few comments for showing up in his Giants helmet. As for the game, I won’t say much about that, but it sure was fun to be there with two of my boys. Max held Rudy for about 30 min and that was pretty cool too.
We left Rudy in the care of Nurse Amy and headed home, where we are now. Everyone’s showered and ready for bed and I’m looking forward to the game we’re about to play, but more getting to my own bed thereafter.
Rudy's Beat 