The Atkins Diet for Rudy

‘Just a quick little post before I head back to Santa Barbara…

Rudy did have the CT scan this morning (I’ve posted pics to show the boys how much it looks like something out of Star Wars). Good News…things look better compared to the last scan. There wasn’t anything detected that is a cause for concern regarding the lungs and fluid so we can continue to focus our attention on nutrition and weaning.

The results of the metabolic test did come back and as Dr. Rick suspected, Rudy’s caloric intake via sugar is too high. Rudy needs the same number of calories he has been getting but through lipids (protein) instead of glucose (sugar). Interestingly, making these calorie adjustments will ultimately help wean Rudy off the ventilator. As I understand it, the body breaks glucose down into water and CO2. The body needs a certain amount of CO2 but if the body produces too much CO2 then it has to work harder to get rid of it. If Rudy is getting too much glucose then he produces too much CO2 and he has to breath faster and harder to get rid of it which makes it harder for him to tolerate the weaning process. It’s not just about pumping him full of calories anymore… It’s a matter of fine tuning his “calorie cocktail” to meet not only his nutritional needs to grow and get stronger but also his respiratory needs. It really is an amazing balancing act and I’m just really, really glad there are smart people around like Dr. Rick and Fellow Sonal and RT Oscar who understand the relationship between all these factors!!! 🙂 Phew…I think I need a Big Mac and hot fudge sundae from McDonald’s on my way up the coast this afternoon.

Rudy has been very calm this morning. He was asleep when they transported him downstairs to the CT scan room. When he came back, he was awake and alert and very content. As much as I hate to leave him, I feel much better about leaving him today than I did yesterday. He’s excited to see Daddy and Wilson this weekend and then Gma Jo, Gpa Dick, Max, Livy and I will come for a visit on Monday in celebration of MLK Day! My folks have helped to maintain the routine at home for the past three weeks…we’re so grateful. They’ll fly home next weekend in time for my Dad to begin his oral chemotherapy. It’s not easy to be away from home when you’re in the midst of your own health crisis and that makes me appreciate my mom and dad’s willingness to come and be with us even more!!!! Their time with us hasn’t been in the best of circumstances on many levels but it has been cherished time nonetheless. Thanks Mama and Daddy…aka Gma Jo and Gpa Dick!!!!

Ok, I best wrap up and get ready to leave…’Gotta make room for all those guardian angels I just know must come to watch over Rudy in our absense.

Where Are We Now?

Well, it’s the end of another day and Dr. Rick just came in to check on Rudy one last time before the day shift ends. It was a full day in the unit…LOTS going on in the hallway outside Rudy’s door with the trademark “quiet bustle” that starts to stir when things get busy. Of course, busy usually means serious needs and that weighs heavy on my heart…always. It must have been weighing heavy on Rudy too because he struggled some this morning finding a comfortable breath and heart rate. He received a couple of doses of meds and by 2pm this afternoon, he fell asleep and soundly slept all afternoon.

We come, now, to the end of another week and my question as I prepare to head back to Santa Barbara tomorrow is “where are we now?”. Last week there was hope we would attempt to extubate early this week. That didn’t happen and there hasn’t been any talk of how long it’ll get pushed back. Two weeks ago the order to stop feeds to his gut was given until he is extubated. Is that still the plan or does the delay in extubation change that? What are the big risks now? Last week there seemed to be light at the end of the vent-tunnel…and this week it feels like Rudy is marooned on vent island. In my check-in with Dr. Rick, I’d say he is guarded but continues to feel Rudy is on a slow upswing…that’s encouraging coming from Dr. Rick. I appreciate his perspective.

Although we didn’t talk specifically about extubation today, my guess is that it won’t happen anytime soon. In talking with Dr. Robert last week, I believe at this point the key to extubating Rudy is sprinting. We need to get Rudy back to sprinting 3-4 hours three times a day. Rudy stopped sprinting last week because he wasn’t tolerating it well and was easily agitated. We have reason to be encouraged by his vent settings of 14bpm and pressure support of 12 but we have stalled a bit.

This brings us to the issue of feeds…how much longer will they put a hold on feeding Rudy? He had a metabolic test today and the test results should come back tomorrow. The information gathered from the test will help the team determine the best nutritional/caloric combination for Rudy at this point. The decision to stop the feeds until Rudy was extubated was, in part, to give the lymphatic system time to heal. The problem with waiting too long is that TPN (the nutrition he gets through his IV) is hard on the liver over time. So far the liver looks good and we certainly don’t want to compromise the liver’s health with too much TPN. Dr. Rick wants to consider all this information carefully and come up with a plan to start feeding possibly with a feeding tube that goes through his stomach and directly to the top of his intestines. Rudy was weighed today (see picture) and weighed in at 11lbs and .07 ounces! He’s definitely growing!!!

So, damage to the liver is a potential risk but I think infection still remains the greatest risk. Thankfully, Rudy only has three “foreign” lines right now…the ET tube down his throat into his lungs, the feeding tube down to his stomach through his nose and the IV in his left arm. These are all potential sources of infection but thankfully his cultures this week have come back negative!

Lastly, Drs. Brian and Rick have ordered a CT scan of Rudy’s chest tomorrow (Fri.) morning. They want to take a closer look at pockets of fluid that have accumulated on Rudy’s right side. This mornings xray was about the same as the past couple of days but not as good as it has been. Dr. Rick said that if tomorrow’s early morning xray shows a decrease in the fluid then he will cancel the order for the scan. I’ll wait to return to SB once Rudy is safely settled back in his room if the CT scan does happen. We’ll have to wait and see…that seems to be the case with everything I’ve listed here tonight so we’ll keep you posted as things continue to unfold. Please pray that things will, indeed, unfold!!!

Seriously! Rudy fell asleep during today's bath!!!

1-14-09: Happy 15-Week Birthday

: Bubble bath #2

0031

: Clean and Cozy

How can it be 2 weeks into January already!!!? Time truly is flying by and that feeling is compounded by the fact that it’s hard to keep track of what time of the day it is in Rudy’s world. Last night, Rudy’s bubble bath took place at midnight and we didn’t get settled down for our night’s rest until 2am! He gets 20-minute ivp/respritory therapy treatments every 6 hours around the clock, a daily chest x-ray anywhere from 3am-5am and a topsy-turvy sleep schedule so you learn to sleep when Rudy sleeps. We had a chance to nap together again today as I held him for a couple of hours this morning. Precious!

Rudy turned 15 weeks old today. There wasn’t anything particularly celebratory about the day…but it was a good day. Rudy slept, did his OT exercises, had fitful times which caused the usual fever and high heart rate but he didn’t need any “rescue” doses of medication to settle down, he also had some alert, calm stretches this evening. There weren’t any big changes on the vent…he tolerated 14bpm and a pressure support of 12 all day. The second round of ivp treatments he has been getting this week is to prevent his lungs from collapsing and to loosen up any secretions in and around his lungs by shooting pulses of air into his lungs to inflate them. He has endeared himself to all his RTs because he actually likes the treatments…he chills out and doesn’t fight it. Too cute!

Nurse Mary is back again tonight so Rudy will get another “midnight bubble bath” before bedding down. He just had his ivp treatment so he should sleep real well after his bath. So, we end another day…so thankful for another day that, as we have learned this past week of deep loss for our extended families, must not be taken for granted. Nighty-Night from Rudy’s room…

Nurse Mary’s Famous Bubble Bath!

: Bath time fun

: Nurse Mary making bubbles!

See Rudy’s 1st bath (now, right side up!) Part 1:

Part 2:

Oops…No Bubbles Today!

: Mommy helping with Rudy’s IVP treatment

So sorry to leave everybody hanging but Rudy didn’t get his bubble bath last night afterall. In the time it took me to get from Santa Barbara to L.A. Rudy got all fussy again causing his heart rate to soar and a bit of a fever. Nurse Mary and I worked to get him calmed down when I arrived and she didn’t want to risk getting him worked up again so we let him rest. Although I slept pretty good, Rudy fought a heart rate above 200 and the nagging fever again throughout the night so we settled for a sponge bath this morning at 5:30am. Today has been much of the same. I did get to hold him for 2 hours and although he was fussy when we started, he did calm down and fall asleep for a couple of long stretches as we cuddled (unlike last week when I couldn’t calm him down and we had to cut our time short). He remains at 14bpm and a pressure support of 14 on the ventilator and Dr. Rick is going to leave him there…no weaning today. Our hopes of an attempt to extubate will have to be put on hold for now. I hope to post those sudsy, bubbly bubble bath pictures later today…standby!

Since we’re on the subject of baths, I have to share a special little “hug” from God I received this morning. Although Rudy’s condition didn’t warrant drama last week, I was feeling pretty discouraged and I realize now that the discouragement was due, in part, to simply getting tired of the hospital routine. I admit that I’m starting to get a little tired of the drive back and forth between Santa Barbara and L.A. as well as the soup downstairs (as yummy as it is) and the walk out of the ICU, down the hall and the wait to be buzzed back in again every time I want to go to the bathroom….etc. But the thing that is getting the most tiresome is showering in that same bathroom down the hall outside the unit. Now, don’t get me wrong, I’m REALLY thankful that I even have a place to shower and that I’m able to stay with Rudy at night but morning after morning for the past 2 months, I’ve woken up, grabbed my tub of toiletries and made my way to the only “public use” shower on the floor. Sometimes I have to wait my turn and sometimes I’m lucky enough to find it empty but always I have to do a bit of cleaning before I can begin. I’ll spare you the details but, let’s just say, people don’t give a whole lot of thought to how they leave a bathroom when they are finished. Icky by a normal person’s standards…worse for someone like me with MILD O.C.D. tendencies (no wisecracks Rolf!). Well, I made the walk down the hall this morning dreading my trip to the “spa” when I opened the bathroom door to the strong scent of “Pine Sol”! The shower room was clean and well stocked with t.p. and papertowels and I was in “hospital heaven”!!!!! Call me a simpleton but it made my day!!!! You know what they say, “Fresh Undies, Fresh Outlook!”. No, nobody says that, I just wanted to see if you were paying attention. 🙂

So, today is a new day and we forge ahead in the fight alongside Rudy and trust in his continued measurable progress. Thank you for loving him…and us…in this journey!

Homage to a Hero: Dr. Robert Kelly

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.

1-09-09: 100 Days

For those of you who have school-aged children in your life, you’ll know the significance of “100 Days of School”. Every year for the past 7 years at least one of our kids has come home with the assignment to count out 100 kernels of corn or pieces of pasta to paste on construction paper OR they’ll parade out of school proudly wearing a “100 Days” hat they made that day in their classroom to commemorate the 100th day of the school year. Well, I’m not sure Rudy can count out 100 pieces of bow tie pasta (maybe we’ll try 100 M&Ms later!) but today does mark his 100th day at UCLA (1 day in labor & delivery/NICU and 99 days in the CTICU). I think we’ve mentioned before that Rudy has the distinction of being the first and remains the only occupant of room 5439 in the new Mattel Children’s CTICU. Reaching 100 days in the hospital isn’t exactly the happiest of milestones but it does mean 100 days of life for Rudy for which I’m deeply grateful…so let the celebration begin!

Today started off with a vagal-episode which happens when secretions impede the flow of oxygen to Rudy’s heart causing his O2 sats to plummet and his heartrate to spike, initially, but if it is left unattended the lack of oxygen causes the heart rate to lower and that’s bad. This happens periodically and it has happened a couple of times in the last 36 hours. It’s easily rectified with a “bag-vent” and suction and, thankfully with Rudy, once he is treated his numbers bounce back but it’s still unsettling to watch. I woke up this morning to the alarms of the vent and monitor when Rudy started to vagal so I started the day a bit disoriented. Once they got him cleaned out, the RT started Rudy on a two-hour sprint but he got tired after 45 minutes. Right now he is resting on 20bpm but they’ll drop that rate back down to 10bpm in a little bit and try a sprint again later.

Although these episodes have postponed his sprint schedule, they have not interrupted his vent rates. Aside from the little break he is getting right now, Rudy has held steady at 10 bpm with a pressure support of 10 most of the week so, all in all, Drs. Robert and Brian feel we are still making progress. I’m not sure if any of this will postpone the extubation attempt early next week. We’ll have to wait and see.

I’m planning to head back to SB early this afternoon. I hate to leave Rudy, though. The past couple of days have been a little unsettling and I’m paranoid to leave him so hopefully he’ll stabilize and find a comfortable place and stay there until Daddy and Maxi come tomorrow (Saturday). Please pray for Rudy’s strength and his ability to recover quickly from any kind of episode. He needs to learn to calm himself down eventually when he gets upset or agitated. He certainly has alot of opportunity to practice! Go, Rudy, Go!!!!

Grieving Uncle Rixie

While so much of our world has to do with what goes on in Room 5439 at Mattel UCLA Children’s Hospital, we are aware that life, with all its twists and turns, goes on around us. The signficance of this became profoundly clear to us today as we learned that our dear Uncle Rixie passed away. He made it to 100 in November and then even through Christmas (photo below) and New Years, but peacefully left us while napping this afternoon.

Just this week, I took a look at the calendar to see if there would be a way I could steal away from the Rudy routine and pay a quick visit to Uncle Rixie in the Bay Area. I’m not wracked by feelings of guilt for not doing so, but just sadness over missing out on a chance to be with him (anyone who had the pleasure will know instantly what I’m talking about). I have been fortunate to know many remarkable people, but I’m not sure how many could realistically be described as possessing true greatness. I’m certain of at least one; who combined remarkable achievement, deep character and personal warmth over a lifetime to the benefit of thousands.

Over the last few years, Rixie maintained that he had lived long enough. With his passing, there isn’t the pathos of one being robbed of years yet to be lived. Yes, 100 years constitutes a “nice, full life”, but that doesn’t preclude us from longing for one day more. I was so hoping for a chance for he and Rudy to meet.

I miss you “Big Pardner”!

1-07-2009: Happy 14-week Birthday!

Rudy turned 14 weeks old today! I’m so proud of him…I’m proud of his will to fight…I’m proud of Wilson, Max and Olivia and their will to remain strong and keep up life’s routine in our prolonged hospital stay with Rudy. I remember sitting with Rolf and the kids in a restaurant in August shortly after Rudy’s diagnosis talking about how it would take a commitment from us all working together to give Rudy a chance at life. I’m not sure they really understood what that meant at the time…I’m not sure any of us really understood what that meant…we’ve already been stretched beyond what we imagined…Rudy’s endured more than we ever imagined…and yet, I’d say, our family is thriving in the midst of it all. We are learning and growing and, in the long run, will be better for all that we are experiencing. Rudy is learning and growing too…and although his journey so far has been one challenge after another, his opportunity at life is due in part to three siblings willing to accept “doing life” differently eventhough it’s really hard at times. ‘Something I can’t wait for Rudy to understand when he’s older.

Today was much like yesterday. Rudy continued at 10bpm on the ventilator and tolerated 3 one-hour sprints. He did struggle with a high heart rate over 200 for a long stretch this afternoon but, thankfully, it did not compromise the progress he has made on the vent. He also spiked a high fever again so he’s back on antibiotics until the cultures come back. It’s hard to determine what is causing what…is he fussy and battling a high heart rate because of the high fever or is he spiking fevers because he’s upset and fitful? It could be infection, it could be withdrawal, it could be him being a normal baby or it could be the start of another “issue”…it’s simply hard to know with Rudy. Although he is off most of his heavy-duty drugs, he did need a couple of “rescue” doses of methadone today to get him to calm down and his heart rate back to a safe range. His struggles yesterday and today are concerning but don’t feel like past setbacks which is good.

The plan is to increase the sprints tomorrow to 90 minutes. I hope to hold him as our time today got cut short because he couldn’t settle down. The only thing that helped at all was the pacifier…he loved the pacifier again today. He sucks so hard but can’t keep the pacifier in his mouth because the ET tube gets in the way. Nurse Denise and I tried to solve the problem with tape as you can see in the ridiculous picture below but it didn’t work. Poor thing…he puts up with alot in our trial and error attempts. I realize I’m at a bit of a disadvantage not “knowing” my baby prior to his hospitalization. His likes and dislikes, what works with him and what doesn’t is all a guessing game at this point. There’s alot to learn now that he is starting to behave like a normal baby…I gladly confront that big learning curve! 🙂

a failed attempt at securing Rudy's pacifier

1-06-09: Teething???

Call me and Nurse Denise crazy but we were convinced that Rudy was teething today. Although it’s a bit early, he was showing the “typical” symptoms of a teething baby and the only thing that would calm him down was gnawing on my finger. Denise and I were both amazed at how vigorous he “latched” on to the pacifier that Denise custom fit around his ventilator tube…he’s a strong sucker and I sure pray that what we saw today translates smoothly when it comes time to introduce nursing!! Check out the powerhouse below:

Rudy had a good day in general. He held steady at 10bpm for most of the day. During the whole “teething?” episode, he did get himself worked up into a frenzy from which he couldn’t calm down and at that point they bumped the vent up to 24bpm for a couple of hours. Before long, he was back down to 10bpm and even tolerated two one-hour sprints!!! It’s 10pm and he just finished another sprint – his third one today. He’s doing really well. The plan is to continue with the sprints this week – increasing them gradually with the goal of possibly attempting extubation early next week! Currently, Rudy is fluid- and infection-free so everyone feels we have a positive window of opportunity right now!

The team has decided to continue to hold off on his feeds until after he is extubated. In the past, feeds to his gut seemed to add to the fluid issue. Although Dr. Robert said everyone is anxious get going on the feeds again, the consensus is to focus on extubation and give the lymphatic system a little more time to heal and strengthen. As of this morning’s xray, Rudy’s left side was completely clear of fluid and the right side had just a small pocket of fluid that was unchanged from previous xrays. This is encouraging news and I’m praying in advance that when feeds do start back up again, Rudy’s lymphatic AND digestive systems will work GREAT!!!

What strikes me about today is the “normal” baby things that happened for Rudy…time sucking on a pacifier, sleeping in mommy’s arms for almost FIVE hours, crying and being fussy while maintaining good sats and blood pressure… While the unit was packed and buzzing with activity today, Rudy and I relished the moments of normalcy that we’ve not experienced yet. Simple moments I hope never to take for granted!!!!