Trish, Rudy, and I have just entered Santa Barbara city limits–almost home and very excited!
As a side note to all of those concerned citizens out there, Rolf is not writing this while he’s driving. Someone at the office is putting it up for him.
Author: Rolf
Rudy has left the building!!!
We are glad to announce that we are now, at 2:50pm, on the road home with Rudy! Praise God!
An Action-Packed Monday!!!
Today has been a fast-paced day and I’m not even sure what kind of time I have to post right now, but so much has happening I don’t want to be incommunicado with all our fans out in Rudy-land.
Today started with a bit of a wrinkle (actually more than a bit of one) when Gwee, our discharge planner, came in and had to tell me that there was NO WAY Rudy could go home on Tuesday. As there was quite a bit of back-and-forth among the medical teams and the discharge timeline only came clear over the weekend, there were details regarding home health care and equipment that hadn’t been lined up yet and there was little-to-no chance that the agencies, appointments and insurance approvals could be lined up in one day. Needless to say, I was a bit dismayed hearing anecdotes about patients being kept at the hospital for days simply waiting for all the home care arrangements to be set up. Over the past six months I’ve learned there isn’t much to be won by griping about or fighting the system–you really just need to do everything you can to get it to work for you. It would have just been really depressing to have the day we’re waiting for put on hold for something other than Rudy’s condition, but the team here is also not about to do anything to jeopardize the amazing progress he’s made. They couldn’t let him go home without being certain that a home care agency was in place with all of the necessary equipment, so I had to call Trish to delay her departure. Bummer.
The sticking point was securing a pediatric home health nurse to get us set up on one day’s notice. I didn’t know I had “people”, but it turns out I do. I left a message for our friend Tera (a PICU nurse in SB) and she called back in short order with good information on an agency with nurses she knew well (yeah, Tera!). One phone call later saw me bounding through the unit to let Vicky and Anita (cardiac Nurse Practitioners) know that we had an appointment for 4pm tomorrow. Not quite sure how I did it, but I’ll credit the hand of providence–the discharge folks had called the same agency and had no luck. Doesn’t really matter–I gave Trish the go ahead to start rolling.
Rudy’s been wonderfully stable all day–he’s doing fine on room air with no oxygen. In between discharge briefings and demonstrations of my nursing proficiency, the stream of farewell visitors began passing coming by as staff who aren’t going to be here tomorrow wanted to come wish Rudy well. It was a fantastic afternoon, so Nurse Shelly got me and Rudy set up for a trip to the patio, but this time it was much more simple–no monitors, no oxygen, no nothing. It took me awhile out there before I realized I could just pick him up and walk around, which is how Trish found us. You celebrate the simple things, like being able to hold your baby and spin around without having to worry about getting tangled in lines.
Right now it’s well past midnight and we’ve got to try to get some rest, but I’m not sure how much sleep we’ll get–just too much adrenaline and expectation.
Random observation: The length of our stay here was brought forth in a new way when I encountered Dr. Federman here in the unit this morning. She was attending the week we brought Rudy into the unit and about to go on maternity leave. You know you’ve been in the hospital for a very long time when your stay elcipses the maternity leave of one of your doctors…
Stirring reality check: I was eating take-out down in the basement lobby last night when I was approached by an unfamiliar couple asking me if my name was Rolf. They went on to say that they had come across Rudy’s Beat in researching treatment options for their own unborn baby and our story had a part in bringing them here to UCLA. There little girl was born a week ago and is now in the NICU. In just the brief chance we had to visit before they made the walk off to Tiverton House to spend the night apart from their little one brought on the unique experience of feeling wildly divergent emotions that is part of life in these realms: joy for progress, empathy for another’s struggle, comfort in finding others whose eyes communicate more deeply than words ever could. Our celebration over our departure from this battlefield is genuine, but at the same time burdened for others who engaged in their own fights. Hang in there, Shawn and Anna–thanks for saying hi.
Tuesday will be a big day and it’s highly unlikely we’ll get to posting anything, though we may try to give remote updates on status. In addition to the discharge conferences, we’ll spend most of the day saying goodbye to the exceptional group of people who have come alongside us on this journey. By way of tribute, we’ve compiled a photo album of those we’ve been able to capture over the last six months. We can’t say thanks enough!
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| Team Rudy |
(it may take some time to load, but then enjoy!)
I got no lines in me!!!
This is Rudy’s IV stand. It is as fine a piece of equipment there could be. Tall, stable and highly mobile. I’ve never really pondered the IV stand. It’s just always been there doing what it’s supposed to do. It stood by his bedside and accompanied him on every trip for every procedure. It once bore a lot more pumps than can be seen now–in fact it once was part of a set of as many as three that were arranged around him. I mention it today because the astute observer will notice that there aren’t any lines that can be seen, because it’s NOT ATTACHED ANYMORE! For the last week or so, it’s only been hooked up to deliver a few meds, but with the removal of the last pic line today there’s no way to attach it to Rudy anymore. I think it still has to be in the room on standby, but every chance I get I push it further away from Rudy’s crib.
The team drew the final labs at noon today and after all of the counts (liver, Potassium) were what they wanted to see, the pic line was removed. There were some strong feelings about this as it had been in around 40 days and Rudy’s had them in a lot shorter than that before they got infected. There have been reports that our otherwise civil and measured cardiothoracic surgeon allegedly threatened to put a line in one of the fellows if it wasn’t removed by a stated deadline. I’m guessing with it’s removal that such measures did not need to be taken, but I may just check the common points of insertion during rounds.
Rudy (and his Daddy the nurse trainee) have made good progress today. He was switched over to room air this morning, so he’s just getting a simple mist blown to the front of his trach. His 02 sats are looking good. We’re trying to keep consistent with feeds–he usually takes about 20-30ccs by bottle and then we put the rest through his Gtube. We don’t want him to mess too long with the bottle and get tired out and we also want to make sure the feeds don’t drag on too long so that there’s good space between them in order to build an appetite. We’ll look forward to making progress on this at home because, even though we are trying to regulate the environment there are a number of distractions here in the hospital that upset the schedule.
On Monday, there will be some final discharge discussions. Dr. Dan would like to do a discharge echo on his heart and then there needs to be some coordination on weaning his different medications. He’s on an awful lot of drugs due to the number of issues he’s had, so there will be some thought given to what needs to be in place with him in the long term. The team will also make contact with our pediatrician and cardiologist in Santa Barbara to insure a good continuity of care.
There has been quite a buzz around the unit regarding Rudy’s progress. Everyone is truly excited that this little warrior’s sojurn is coming to an end. There have already been a couple of goodbyes as folks come off their shifts and there’s no denying the emotion we feel about these people who have been so dedicated to Rudy and our family. I expect there will be a lot more feelings over the next two days. I can’t wait until Trish gets here tomorrow morning for the last push.
But before I close, I should mention something else that has caused a buzz in the unit. Today I perfected my Pacificier Retention System (trademark). I can’t claim the original germ of the idea as I believe Nurse Aliza was responsible for that, but after another night of standing at Rudy’s bedside and holding the paci for him, I finally figured out a way to stabilize things without making them too tight. I just needed to poke two more holes into the pacifier for the ear loops (which one obtains by cutting the elastics off of two hospital face shields). Cutting a notch in the top allows ample room for the nostrils. Dr. Lee was so impressed he grabbed supplies to take home for his newborn son. To think, they have the equipment here to do multi-organ transplants, but nary a PRS. Yes, six months in the ICU gives you a tremendous amount of time to think.
Tuesday?!
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!
Remembering Katie
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!
Greetings from Camp Wanna-Be-A-Doc!
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!
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).
Time for Milk!
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!
Homage to a Hero: Dr. Rick Harrison
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.
“TP-eNd”
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!
Rudy's Beat 