Trish just got back to the room at 2:15. The heart drain was installed and fluid is draining, so now we have a third pair of generic fishing bears. Rudy’s blood pressure and heart rate immediately changed for the better. Now we just need to pray it’s the right kind of fluid. If it’s “the wrong kind” it could mean another surgery. Waiting for word from the lab….
Category: Rolf’s Posts
Another Procedure this Morning
It’s Friday AM and I’m in Santa Barbara. It’s been great to see people and be in familiar surroundings though my mind and heart are understandably split between two places. Trish just reported that things in LA are well but (I’ve found I always listen for that word when I check in with the doctors) the fluid around Rudy’s heart did increase overnight and there was a corresponding rise in his blood pressure. So, the doctors have decided they need to drain it–while they could have taken him back to surgery, they have opted to do it at bedside via another chest tube. From my distance it seems that there could be any number of reasons for this, not many of them super alarming at this point. We’ll keep you posted.
Things at home are well. The kids are certainly glad I’m home and, depending on how today goes, we may try to work this weekend so that they can stay in SB. Having to go to LA every weekend to see us is wearing on them, so hopefully we’ll be able to spare them the round trip out .
Homage to a Hero: Dr. Dan Levi
Another one of the people who have been such an encouragement along the way.
Upon learning of Rudy’s diagnosis, the efforts I made to research HLHS treatment at UCLA led me to the Pediatric Cardiology website. As I looked for points of contact, I came across Dan Levi’s webpage where two things caught my eye: a title listing him as Director of the Pediatric Cardiology Fellowship and an undergraduate degree from Stanford. I confess I’m not a very good alum and can’t remember a time I played the alma mater card (after all, it might not mean anything more than my dad and his writing a lot of checks to the same place 20 yrs ago), but it was worth a shot if it served to give me some leverage with someone in authority in the place my son needed treatment. So I sent an e-mail explaining our diagnosis, asked what treatment might look like at UCLA and closing by pointing out our common Stanford tie but making it clear that this didn’t imply any inappropriate obligation.
The next day, just minutes after I got a “GO CARDINAL” e-mail telling me he would be calling shortly, Dan rang me on my cell phone. Consistent with the conversation I had a day earlier with Gary Satou, I found comfort in speaking to someone knowledgeable in the scary mystery thrust on us. Dan had good information, wise counsel and, more than anything, apparently as much time as I needed to ask questions and have information repeated. He informed me of the steps UCLA had taken recently specifically in bringing on Brian Reemtsen to handle cases like ours. He made it clear that I should contact him via phone or e-mail at any time if I had need.
Rudy’s early arrival prevented any chance of us having a chance to get acquainted ahead of time, but shortly after Rudy was placed in the CTICU, I met Dan in person. I’m beginning to fear conversations with Dan as with each one we land on another common connection: Stanford, people at Stanford, his parents live in SB, I’m acquainted with his aunt and uncle, we were born in the same town in NJ…I fear we’re not far from discovering that I bullied him at summer camp or egged his car in high school.
We’ve discovered so much about each other because Dan is personable and makes a point of stopping by and checking on us about as much as he checks on Rudy. Right now, he’s not directly involved in Rudy’s care but, like most around here, seems to keep tabs on the Norwood patient. There have been a few days where he’s come by and made mention that he wasn’t actually on floor duty. Before we could compliment him on his dedication he explained, “I only come up here because the tea is free and buying it downstairs everyday would be really expensive.” Given my reputation in every place I’ve worked of making excuses to drop by offices with free coffee and tasty snacks, I applaud Dan.
As Monday was a particularly rough day that left us unsettled, Trish and I were touched that he made a point of stopping in quickly just to offer some empathy stating “I don’t want to come by when things are only going well”. In the years ahead, his specialty of heart catheterization will have him involved with some of Rudy’s key procedures down the line. We’re grateful that coming back to UCLA for these will not only be a chance to receive excellent care, but a chance to see a friend.
A Wonderfully Boring Day
Our prayer for a calm day was answered today. Rudy was calm all day, blood pressure stayed right where it was supposed to without any meds and fluid continued to drain. The team has been progressively turning down the ventilator every four hours and overall he’s handling that well. There have been about three episodes where his breathing gets rapid and shallow–usually when we’re talking or up close to the bed. But while he wasn’t able to recover from these over the weekend, today he was able to slow his breathing down. As I write this, he’s on the high side (75 bpm), so I’m quietly praying that number down. The alarm goes off around 80, we’d love to see it in the 30s. Ahhh, just crossed down into the high 60s. Now my own breathing is slowing…
Assuming his progress continues, we are probably looking at another week on the ventilator. If all remains calm tonight, I’ll come to the hospital to wish Rudy a happy three-week birthday and will then make the run up to Santa Barbara for a couple days. The kids have been such troopers (not to mention Oma and Opa), so it will be good to have time with them at home, walk them to school and cheer on Max at his flag football game. It will be good to sleep in my own bed and see a few familiar faces in the office and around town.
The breaths per minute have fallen down to 57 right now…sweet!
All’s Calm on the Night Watch
After the day we had, I’ve come back to sit with Rudy for a few hours. Just as we left this afternoon, they backed off most of the medications, so when I came in he had his eyes wide open and was looking around–I only wonder if he realizes what kind of day he had. Within a minute of my coming up to him, all the alarms started to go off as his heart rate, blood pressure and breathing all went up. Excited to see you too, champ!
In the hours since, he’s calmed down and now the numbers look beautiful. About an hour ago, Dr. Lee came in and was considering some medication to lower the blood pressure, but before they could get it in the drip it dropped on it’s own. I think he fell asleep. So now, the room is tranquil and I think he might be lulled into deep sleep by the bubbling of the chest drains–that’s right, the polar (I mean “generic”) bears are back, but now he’s got a twin set and they rigged them with some kind of bubbling water effect so it sounds like a babbling brook in here.
In case your curiosity is piqued, here’s what generic bears look like:
Not sure what this is about? Click here and then here for the background on this important issue.
Not Quite the Calm Day we Prayed For
Rudy’s been on quite a ride today. The weekend had activity enough, so as we walked into the hospital this morning, Trish offered up a quick prayer for a calm day with no surprises. But that wasn’t to be. It’s now just about six and we’ve sat here at Rudy’s bedside for the longest stretch so far today—about 40 minutes. Rudy underwent three procedures today that had us out of the room for as much as 2hrs each time.
When we came in this morning, he looked plump as a turkey due to infection and the fluids he was retaining. The skin on his torso was stretched taught and shiny from all the stuff in there. Through the night, the doctors were very concerned with keeping his blood pressure high. When we left last night the alarm for low blood pressure seemed to be going off every three minutes and that pattern continued. By this morning, they put him on another dose of paralytics and sedatives so that the team could regulate his blood pressure and ventilation without any movements of his interfering. While this was still categorized as part of the “ups and downs” it was an emotional step backwards to see him immobilized like he was around the surgery.
They decided to insert two chest tubes to drain the fluid off his lungs. The fluid coming from the left side bore evidence of infection, which confirmed the course the team had started with antibiotics a couple days ago. Fortunately, it was determined that the fluid was just “milky” and not “puss-y” (finally some medical terms we understand)—the latter would have been signs of a more advanced infection that would have set things back further. Almost immediately after the drains were placed, his body looked remarkably deflated and both his blood pressure and breathing began to improve. Relieving all that pressure made it easier for his blood to pump and his lungs to work. As we walked back into his room, we were asked to give consent for the insertion of a new IV catheter line into his chest which meant we had to leave again. Unfortunately the nurse was not able to place the line through his little arm veins (something they warned us might happen) after multiple tries, so after a brief return to his bedside it was decided that Dr. Kelly would put in a chest port, so even though we were running out of lobbies to sit in, we stumbled out for another hour or so. This procedure went well and an X-ray confirmed that the line was in the right place so now Dr. Abel and Nurse Katrina are making final adjustments next to me as it’s getting dark outside.
The vital signs and labs are looking good. They’ve backed Rudy off most of the medications and he’s starting to wake up. A few minutes ago, the alarm went off for high blood pressure which is something we haven’t heard in awhile. The ventilator has been turned down to 30 breaths per minute after being above 40 the last few days. The team feels good about how he looks, but we can’t help feeling he looks a bit pale and wiped out considering the day he’s had. Here’s praying for a night of rest and that calm day to be tomorrow.
Clearing Rudy’s Chest
The doctors are watching Rudy closely and just asked us to leave so they could put in some drain lines to get the fluid off his chest. Fighting the infection is the primary focus right now. They have put him on paralytics again so he doesn’t move as that could have averse impact on blood pressure and fluids in his body.
Everyone’s Trying to Catch Their Breath
It’s Sunday evening and the ups and downs this weekend leave us feeling sapped. Rudy was stable through most of last night until about 4am when he had another drop in blood pressure. This one was corrected with a change in medication. He was stable through the morning and then had a serious drop around 11am where the team had to jump in and do chest compressions for about 90 seconds until they got him stable. Fortunately, Drs. Reemsten, Kelly and Shannon were among those present (on Sunday morning—I don’t think they ever bring in a B-team here) and after wheeling in all the equipment for ultrasounds, Xrays and Echos it was determined that the primary cause was a clog in his ventilator that he wasn’t strong enough to clear. His major organs and especially the heart were looked at closely and determined sound. Later in the afternoon, they did an ultrasound on his brain just to make sure the episode didn’t cause any neurological damage. All was determined to be clear and the team continues to feel that these are part of the ups and downs that come with such a complex surgery on a delicate patient.
If this is part of the ups and downs, we’re not sure what it will feel like to experience some full blown complications. Dr. Reemtsen let us know from the outset that he would always be frank with us and tell us clearly if we ever get to a place where circumstances are dire, so there have been a couple of times in the last two days where I’ve reminded a doctor or two of this and been reassured that this is still a matter of time and these kind of setbacks are all things that need to be watched closely, but among the issues that arise with a patient like Rudy. As I write this, Rudy looks peaceful and angelic having had a bath at the end of all the episodes today. After being almost off all of medications on Wednesday, he’s now back on a whole slew of drips for blood pressure, infection, kidneys, blood product and a nice sedative so he can sleep. I’m thinking of asking the nurse to sneak Trish and I a couple doses of our own of the latter.
The two issues that seem to be of primary concern are infection and Necrotizing Enterocolitis (NEC). The latter is a common but potentially serious condition where the bowel doesn’t work (perhaps due to poor circulation) and it can develop into a rupture which would require surgery. As yet, they are taking Xrays every six hours and don’t see any ruptures. So now they address it by restricting food and giving antibiotics. They did discover some infection in cultures taken around his ventilator tube, which could also explain the accumulation of fluid around his lungs, lower blood pressure and general weakness. They started him on a course of antibiotics yesterday afternoon which will hopefully address both conditions.
In the midst of all this activity, the kids came to LA for a visit this weekend. Really great to see them, but I think I have a sense of what prison furlough must feel like. They really are troopers and we are so grateful for Oma and Opa taking care of them, but it’s clear the separation is taking a toll on them. We were able to squeeze in some time for fun on their terms (skatepark, movie, football, play) but it still included a goodbye that came too quickly for us all. We were hoping that I would be able to get back to SB sometime this week as even just a couple days up there could go a long way for them. I still would like to do it, but even a passing conversation with a doctor in the hallway this evening affirmed that we’ll need to stay close by Rudy for the next couple of days.
So please pray that Rudy’s blood pressure would stabilize and that antibiotics would do their work on the infection and the NEC. Pray that he would rest, gain strength and be able to move along in his recovery. Pray that we would be patient—at peace with the timeline for all of this and that we would have renewed confidence for a positive outcome for Rudy after the unsettling experiences of today. Pray that our kids would be at peace at their own level of understanding and emotions of this whole journey and that we would be wise as to what they need and be able to make decisions to leave Rudy if Wilson, Max and Olivia need us.
Slowing the Pace
Rudy had some challenges yesterday afternoon. He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours. His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress). The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile. They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest. So, he’s been on this course through last night and most of today.
The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process. It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator. So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch. There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in. On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning. This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.
I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids. Please pray for them during this time. Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends. They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.
Seeking the Good in Suffering
The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.
C.S. Lewis The Problem of Pain
In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.
I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.
The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.
In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.
As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.
Rudy's Beat 