It’s almost midnight here at UCLA and I’m just getting a chance to sit down and collect my thoughts at the end of a very full day. I rolled out of SB early and made it here by 9am as the PICU team was rounding. Over the past few days, I’ve been in communication by phone with various members of the team and gotten updates on the discussion regarding Rudy’s treatment and discharge plan. We are so grateful that Rudy’s care involves a team of people from various specialties and different perspectives; so it took a few days to gain consensus. But as of this morning it looks like we are working toward a BIG day on Tuesday. In a perfect world, some members of the PICU team would have preferred for us to have a full floor trial, where a significant step down in attendant care would allow the team to see more clearly how capable Trish and I were in providing Rudy’s care. But the hospital has a severe shortage of floor beds so, it’s been decided that Trish will come on Monday and we’ll do something similar here in the unit for 24 hours.
In the meantime, I’ve continued to demonstrate my proficiency in caring for Rudy–administering meds through the G-tube, doing feeds with the bottle and the pump, changing the trach, and changing lots of diapers. Today a technician delivered some machines and supplies we’ll be taking home and showed me how it all fits together–pretty straightforward and the reality of where we’ve spent the last six months was made clear by how familiar all the stuff was to me. I think I stole some of his thunder as he didn’t have to give his full spiel with all the details.
Rudy is still getting a small oxygen boost and some vapor mist from the trach collar around his neck, but tomorrow the respiratory team will take that away so he can breath room air. His 02 sats have been quite high all day (even to the point of setting off alarms), so it looks like he’s ready. He still has the subclavian IV in, but nothing is attached to it as all the IV meds are discontinued. The team has kept the port in so they can easily draw labs–there is still some concern about his potassium and eloctrolyte levels but that seems more a matter of balancing out his meds. While the line isn’t much of a physical nuisance, there have been some strong voices on the team for its removal just to eliminate any chance of infection.
Rudy also needed to get a hearing screen prior to discharge so two nurses came to do that today. We have to admit that we’ve acquired a level of anxiety with just about any test he’s subjected to, so we’ve had our own little celebration in the wake of him passing! Hear, hear, Rudy!
These developments have made for a busy day for me such that I don’t think this post matches the level of excitement we’re feeling. It’s great to be in the home stretch–please pray that these next few days would be smooth, so that Rudy (and his parents) would continue to demostrate that we’re ready to go!
I know that several of the Rudy’s Beat circle followed and prayed for Katie Manning during her HLHS struggle. Her 13-year-old uncle Mark, just posted a great memoir. Worthwhile reading. Blessings and peace to you, Alan and Vickie!
I’ve had a running joke with the team here that I’m one day hoping to earn a “Junior Doctor” patch. Well, it looks like that’s coming true as Rudy’s room has become kind of like camp. There is a number of things we need to demonstrate competency at before Rudy can go home and, consistent with her temperament, Trish has asked for a list to be compiled which is now posted on the closet door. This weekend Nurse Lindsey is walking us through the day and every time we successfully perform something she notes it on the chart. Sometimes she quizzes us and we even get to practice some things on a very creepy looking doll before we move to Rudy. So far, I’ve received merit badges for trach tie changing, trach suctioning, dispensing meds through the G-tube, G-tube cleaning and securing the pediatrician. Tomorrow morning, I’ll hopefully earn my CPR badge–leave it to me to make this a competition, but I guess I’ve always been motivated by sticker charts.
Since I mentioned her, I just need to say that Nurse Lindsey is the GREATEST NURSE IN THE WORLD! Yeah, she’s highly trained and very skilled at providing acute care for patients who need it. Really grateful for that, but she wins this approbation for stopping at Starbucks on her way in this morning to bring me some coffee. Instead of needing to stumble down into Westwood myself, I got to start my day lounging around in my PJs with Rudy here in the room. Florence Nightingale never did that!
The Great Nurse Lindsey!
While there’s all this activity to keep me occupied and entertained, Rudy’s impressing us all with the great strides he’s making. We turned off the feeds for an hour twice yesterday and let him try to take the 30cc by bottle–success! Today the team decided to try to compress the feeds to move from constant drips to “bolus” feeds–where it all comes in one shorter burst (as it would in a meal). We were going to proceed incrementally by spreading 90cc over two hours and then to one and try a bit by bottle every now and again, but on the first feed this morning we put 45cc in a bottle which Rudy devoured. So, we filled another bottle and he pretty much gave his vote with regard to proceeding incrementally. It was no fluke–he’s done it twice more, so the order was re-written for Rudy to make the call–he can feed 90cc by bottle every 3 hours, but if he’s sleeping or just doesn’t seem to feel like it, we can put the balance in the G tube. He would appear to have his father’s feeding habits.
On the down side, I’ve re-discovered what I had forgotten over the last six years: all that food going in has to come out in some form and a diaper’s seal far from impenetrable. Full breast-milk feeds have resulted in technicolor emissions that register in multiple dimensions. His brothers will marvel at the sounds and I regret that I only brought one pair of pants with me…
It is a very happy adjustment to be thinking concretely about bringing Rudy home. There’s some open speculation as to what our time frame is at this point, but I suspect we’ll gain some clarity on this on Monday when the new attending comes on. I’ve been reflecting on the post I wrote awhile back on the Stockdale Paradox and how our thinking has undergone a shift. Back in January, we had to hold forth that we would prevail over this circumstance without any real idea of how this would come about. I’m certain I didn’t think we’d be headed into April, but here we are. There were twists and turns enough to turn unrealistic hope into insanity, but here we are. Given that we’ve been here six months, we’re not up in arms if it extends a few weeks more. It’s just such an encouragement to be viewing things through a new lens.
I’m looking forward to a quiet night here with Rudy and hope he rests well for tomorrow when Trish and the kids will be coming for a visit. It’s actually been almost two months since we’ve all been here together. Word has gotten out among the staff that the floorshow will be here in full force tomorrow–can’t wait. These poor ICU people–who will entertain them when we leave?
PS–speaking of fun, Livy made another appearance on the web as Greg Lawler shared everyone’s intrigue about how her trademark “green tooth” dangled precariously without falling out for so long. Good news everyone–it finally “fell” out (with a little help from Daddy during a wrestling session).
Trish just called with an update so I’m putting up a quick post. Rudy has been at full feeds (30cc) since 3am and everything continues to go well. So, in the next hour they are going to switch him over to breast milk. We know now that his stomache can process at the volume it needs to, now we need to know if it can process fats without there being any chylous fluid coming out of his lymph system. The JP drain is still in, but probably won’t last much longer, so the plan is to start milk in the next hour and see what comes out of the drain–please pray for NOTHING!
From Rudy’s new room, I can look across the nurses’ station to his old one and it brings back memories of those first days when this whole place was so unfamiliar.I remember being overwhelmed by mysterious pieces of equipment being wheeled around.I remember trying to divine the purpose of many procedures I had never seen before.I remember the parade of people coming in, introducing themselves, their specialty and then examining Rudy.The raw intensity was such that most of the names escaped me well before their bearer even left the room.
A few repeated faces started to distinguish themselves amidst the blur of those first few days.Rudy’s condition was very tenuous at that point and there was lots of attention being paid to him and all the foreign numbers up on the monitors.The doctor with lively ties seemed to be in the room quite a bit, watching carefully.Like everyone else, he watched the numbers tick by, but gave equal amounts of time to watching Rudy—noting his skin tone, the flare of his nostrils and the cadence with which his chest would rise and fall.Even when he was dealing with other kids in the unit, most of his passes by the room included a quick scan and status check.
It was only the most disciplined restraint that kept us from constantly cornering every doctor for detailed explanations on what they were doing and seeing.There was an instinctive sense that hovering over the staff would interrupt their work and divert the attention that needed to be paid to Rudy.But even if he couldn’t give a running commentary, the doctor with the ties always seemed to stop at just the right time to give us an update on what was going on.
Dr. Henderson?Dr. Haroldson?Doctor Richardson?For some reason it took me quite a few quiet checks with nurses to get straight on the name, but finally I got it that the Doctor with the ties was Rick Harrison.Remembering his name at this point isn’t much of a challenge as Rick is the second intensivist who has done the bulk of the rotations during Rudy’s sojourn here in the ICU.
I’m not sure how one could navigate such a journey as the one we’ve been on without trust in the people we simply need in order for Rudy to have a chance.As I’m continually impressed by the giftedness and knowledge of most every nurse, tech and therapist, I have nothing but awe left for the doctors.In position, but more importantly in competency, Rick is at the top as he brings incredible expertise and clinical experience into the very emotional arena of very sick children and the fretful parents that accompany them.
As much as I’d love to cling to the notion that no one knows my child better than I do, I probably let go of it well before Rudy was born.No one loves him more, but it only takes one visit in rounds to be reminded that there are levels of detail I’ll never understand and questions I wouldn’t even think to ask.For Rudy’s sake, I’m grateful there is expertise that far surpasses our own.I’ve come to see that his treatment rarely involves black-and-white decisions; but an involved sequence of judgment calls requiring knowledgeable coordination of disparate and often intricate steps.We are grateful for the many weeks that Rick, with his measured and seasoned expertise, has played this central position.
A good doctor at this level is deeply knowledgeable, drawing on science and experiences with thousands of patients.An exceptional one also recognizes that each patient is unique and at some point departs from the textbook conventions.We have often heard Rick remind the doctors in rounds that Rudy has his own norms.He is probably more intricately aware of the data than anyone else and would never flippantly dismiss it, but his overall assessment leaves room for common sense and basic observation.As helpful as science is, a skilled clinician knows when it should be trumped by simply looking at whether the patient looks peaceful or distressed.
We never lose sight of the fact that Rudy’s condition has us in a place of dependence and we are so grateful that one of the key people we are leaning on is one we trust so deeply.Trish and I have daily discussions about Rudy’s course of treatment, and more often than not they touch on Rick’s opinion.Rick’s esteem among his colleagues seems to match ours as I can’t recall anyone being offended by the many times we’ve asked if he’s been consulted.It was only in gathering my thoughts to write this that I discovered that Rick wears another hat—as Medical Director for the Mattel Children’s Hospital.As far as we can see, they sure have the right guy in charge.
We place our trust in Rick not only because of his technical competency, but also because of his ability to appropriately straddle clinical distance.This journey is about my kid and I’m a human being going through emotions that I’ve never experienced before as I try to comprehend realities I never dreamed I’d have to face.So, I need guidance from human beings, who never lose sight of the seriousness of the situation or some form of necessary objectivity; but don’t engage without emotion.They hurt with us; are frustrated with us; know the process well enough to identify milestones worth celebrating; and introduce well-timed humor amidst circumstances so intense it would never be expected.In light of this, my most vivid memories of Rick do not center around medical details, but on human interactions:celebrating when Rudy peed enough; overseeing Rudy’s first two extubations; losing more than a couple nights’ sleep at home pondering Rudy’s condition; feeling sad and frustrated with us when we had to go the route of the tracheostomy and feeding tube; and stopping in on an off day to see Rudy and Trish after hearing of the chylous fluid in Rudy’s stomach.
Rick describes himself as “the doctor no one wants to see”; because dealing with him means you have a very sick child.Point taken, but given that I have no choice over the condition Rudy was born with, I can’t tell you how glad for the many times we have seen Rick.
Trish and I had a rare Sunday together with the older kids here in Santa Barbara. Started out rainy and then gave way to crisp, clear skies with plenty of wind. I just called down this evening to get the update from UCLA and encouraging progress continues.
Nurse Bobbie reported that Rudy had another good day–14 hours off the vent and continued steps up on the feeds so that he’s now at 21cc per hour. She added on the detail that they turned off the TPN and it took me a few moments into the conversation to realize just how significant that is. TPN stands for “Total Parenteral Nutrition”, or intravenous feeds. A few of the previous attempts to feed him got to a point where the TPN was weaned a bit, but never even close to the point of getting turned off. He’s had it since he was born and, now that they’re getting close to the 30cc feed target to his tummy, the team felt it was time to shut it off. Celebrate the milestones. Yahoo, Rudy, get ready for the next course!
Love those peaceful Saturdays! Rudy has been very mellow today–probably because his night owl behavior was in full force last night. The docs had been weaning him off of his methadone so they decided to hold that for the day in case some of his fussiness during the day yesterday and last night was due to withdrawal. He’s on such a minor dose anyway at this point–we have plenty of time to get him off that while we work on the priority issues. I also think he’s just being fussy like babies are–nothing overly alarming as far as heart rate or saturations. What baby doesn’t go through phases of fitful sleep?
Speaking of the other issues, when it comes to breathing I think Rudy might just be showing off. Today’s order was for two 7-hr sprints and he was so relaxed as he came to the end of the first that the team decided to link the two together without a break, so he’s doing one big one of 14 hours. The team is hoping to get Rudy to a place where he’s on the vent only at night and, provided he keeps this up for a few more hours, he’s almost there.
We have good nutrition to thank for the course things are taking. The feeds are now at 15cc/hr and there’s been almost no fluid coing out of the JP drain (about 10cc over the last 24 hrs). As he’s done very well at this level for the past few days, the team decided to up the rate of increase to 1cc every 6 hours. It seems to be giving him lots of energy to breathe and probably also contributes to his fussiness. He’s not as lethargic and passive as he was a week ago. While he was frustrated last night, I was surprised at just how hard he could clench his fists. Up until now it was pretty easy to open them up, but that’s not the case–he’s got quite a grip.
His being active does make tending to him a bit more challenging, but I fully welcome it if it’s his way of telling us he’s sick of being in the hospital. Stay ornery, Rudy, we’ll fight our way out of here!!
Sure, we know that Rudy’s ability to breathe on his own should probably be the primary factor in the decision, but Trish and I would also like to let it be known that eventually the alarm from the vent will lead to our own institutionalization. We’ve mentioned before that the leak around the trach sets off an alarm on the vent. There’s a medical reason for this. The leak is a good thing, but I can’t really tell you why after having to sleep next to the machine last night. You can’t shut the alarm off, but you can disable it for a few minutes which means the nurse needs to walk over about every 3 minutes. Might want to reserve a few extra beds on the psyche floor downstairs. I think we’ll all be going together.
We’ve told you it’s annoying, but it may be better to let you hear for yourself. Turn your volume up as loud as it will go and then play the clip repeatedly for about 3 hours. For bonus points, try to take a nap. You’ll see why we celebrate that they can turn the machine off as Rudy is able to go on collar sprints for 6 or 7 hours now. But we still can’t get the sound of that alarm out of our heads…sometimes it’s even louder than the voices.
We are so grateful for the week Rudy’s had. It’s Friday evening and Trish and I just switched places. We’ve learned from experience that things need to be taken slowly with Rudy and we’re hesitant to claim progress prematurely, but we are very encouraged that he’s taken feeds for five days without interruption. For now, the rate of increase is slower than in the past but that’s just allowing us to watch things more carefully. He’s about to go up to 14cc per hour so we’re in the range where things got problematic in the past, but indicators look really good–he’s stooling well, there’s no sign of lymphatic leakage and his stomach is emptying well.
There is a huge difference in his breathing. Amazing the difference some good calories make. Today’s order was for two 6 hour sprints and Rudy’s making it look easy. He was a bit fussy this morning so I wonder what Trish was doing to him, but since Aunt Cora and I got here, he’s been very calm and content. Right now, he’s been enjoying a few hours on Cora’s lap before we have to take her to the airport–thanks to Uncle Brian and the Alabama cousins for letting her join us for the week.
That’s the report for tonight. So glad for calm and peaceful days where we can see the progress Rudy is making. Thanks for continuing to pray for Rudy.
It’s Monday morning here in Santa Barbara and Trish and I just had a quick breakfast out by the harbor before she hit the freeway to LA. I just checked in with Nurse Veronica and she told me that she was doing some cooking! During rounds this morning, there was consensus that we should try feeding Rudy again. The drainage out of his abdomen has been consistently down (40cc over the last 24 hrs) and, more importantly, yesterday’s labs indicated that the percentage of chyle is very low. I don’t recall the exact unit ratio, but yesterday’s count of triglycerides (which would indicate chyle) was 78. At the initial trauma two weeks ago it was up over 1000, so we’re hoping that indicates that the lymphatics have healed.
They’re starting out with a mix of special formula with no long-chain triglycerides or fats (as these go right into the lymph system). 5ccs per hour at a somewhat diluted setting and we’ll see how it goes. Let me spare articulate formulations and simply say: “PLEASE PRAY! PLEASE PRAY! PLEASE PRAY!” We want to get past this hurdle in the worst way. Rudy looks really good–the team upped his sprints to 2hrs today as he wasn’t bugged in the least by 90 min stints over the weekend, so we’re hoping to have more positive progress today.
Perhaps a mundane detail, but in the evening Trish and I had together yesterday we put together a new crib for Rudy–at home. As all of Rudy’s life has been lived out in the hospital thusfar, it struck me as an act of prophetic hope (like Jeremiah buying a field in a land about to be overrun in wartime, declaring that one day it would be habitable again [Jer 32]). From the time we learned of Rudy’s diagnosis, we put most of the typical baby setup stuff on hold and as you’ve seen by our posts, we are challenged to walk a line between brutal realism and hopeful faith. This action falls in the latter category. Rudy’s home is not in the hospital. The bed he sleeps in is much cooler than the one at home, but it isn’t his bed. I haven’t forgotten about the elevator ride they owe us. We’ll take it someday. We’ll get to make that beautiful drive along the coast WITH Rudy and then he’ll get to sleep in HIS bed. Not sure how that’s going to happen and what further obstacles lie in our way, but this morning I feel the need to express hopeful faith.
Rudy's Beat 