High- and low-tech grossness.

I got an iPhone this week. Does it make my life complete? No, but it might make me cooler than you (unless you bought the 16gig model). It’s a pretty nifty gizmo and Wilson kept himself and me entertained for most of the trip down from SB today as he tracked our progress by GPS and downloaded various applications. The most remarkable had to be the virtual whoopee cushion which has limitless permutations making for hours of fun. Turns out the whoopee cushion has universal appeal as Wilson has wowed just about every staff member who’s come in to see Rudy–regardless of how many degrees they have. I think it’s some welcome comic relief as there’s an intense vibe here tonight–a full unit wtih lots of very sick kids.

We were encouraged to see Rudy and to hear a good report from Dr. Rick about his condition. He’s very alert for long stretches as he’s only getting small doses of methadone twice a day. Everyone has had a chance to evaluate the CT scan and subsequent Xrays and Rudy’s chest looks very clear. Based on that, feeds to Rudy’s tummy were started yesterday. He keeps holding his ground on the vent and is making slow progress (it’s currently at 14bpm; pressure support of 11). Both Wilson and I got chances to hold him, but mine featured a nice soaking of Rudy vomit during one of his percussive respiratory treatments. The team took him off feeds for a bit, but then surmised that it was more along the lines of what babies do when they get shaken with a full tummy. So, I lay claim to a first in Rudy’s life–the first parent to get spit up on!!!!

Dr. Brian stopped by this evening and confirmed Dr. Rick’s report. Everyone is very positive about where Rudy is–he is stable and holding good ground. Hopefully the changes to his nutrition will push him over the final hump to get off the vent–he’s so close.

I think he’s really glad to have his biggest brother here. Wilson has been great holding him, talking to him and reading to him. I’m glad Wilson came with me. He’s good company, just as long as I get my share of turns with the whoopee cushion.

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.

Chugging Ahead!

I think of Rudy alot, but for some reason I’ve found myself more fixated on his condition than usual. I’m glad someone as kind as Nurse Faye was with him today to pleasantly tolerate my check-ins by phone.

There’s good cause for encouragement. After giving Rudy a couple of days to rest at 16bpm, the team continued the weaning process. The pressure support is already as low as it needs to be, so this morning they stepped him down to 14bpm and he’s tolerated things fine all day. Only a few more steps to go (we pray)–the next one should come tomorrow morning and then we’ll see if they want to do some more sprints before extubation.

There was concern about the IV line going into Rudy’s groin as it didn’t seem secure. After some back and forth over replacement, adjustment, etc. the team decided to remove it today as he really doesn’t currently need anything more than the IV port in his arm right now. While we’re dealing with that area of the body, the team also removed the Foley catheter so he could just let loose into his diaper like all little boys should.

So this is progress: while Rudy is still hooked up to a few monitoring lines, other than the breathing and feeding tubes there’s only one line going into his body through one arm. Nurse Faye says that this means he’ll get to experience something for the first time tonight: A BUBBLE BATH!! As Trish is planning to drive down this evening, I requested they wait so that she can join in the fun.

Thanks for your prayers–this week is off to a good start!!!

Time flies over the weekend…

Let me start out by apologizing to our dedicated Rudy’s Beat readers. We miss one day posting and start getting concerned e-mails. Thanks everyone for following our journey so closely. We had a full weekend and, as you read below, time in Rudy’s room isn’t as idle as it once was, so it was harder to get a post in.

As much as we want to be with Rudy every minute of the day, we’ve recognized that Olivia, Max and Wilson have needs as well. Part of this means giving them time with both of their parents together, so Trish got home Friday night in time for dinner with the men at the mission. We lazed around the house a bit on Saturday morning until we went to watch Max’s first basketball game of the season. Once that was done, I headed down to UCLA with Max as my sidekick as he said he was tired of weekends without Daddy. This ended up getting us there just before dinner, which was later than usual as several of the nurses and doctors reminded me on our arrival–I wonder what these dear people would do without us to entertain them. Of late, it seems that the unit has been very busy with lots of sick kids demanding long hours and attention from the staff. So we sit calmly in our room and are grateful that there hasn’t been much buzz around us lately. Always grateful for check-ins with staff when they stop by, but glad this isn’t driven by urgent needs for Rudy.

Rudy has been holding steady and the team is happy with his progress. As Trish reported, Rudy was getting tired with the sprints and vent drops, so Dr. Robert decided to let him rest on a plateau of sorts–16bpm and he held this well. It might feel like a bit of a letdown to stop the forward progress, but viewed in light of where Rudy was two weeks ago, it is a very different picture. He held at this level well for the last two days and even let the team turn down the pressure support a bit (technical details I won’t get into, but also steps toward breathing on his own). The chest Xrays are clear and the methadone has been turned further and further down to where he is very alert and interactive. The downside of this is that he now gets fussy (as babies do) and needs to be entertained. The only problem is we’re limited in many of the usual resources (carrying him, putting him in the swing, on his tummy, etc). So he lies on his back, waves his arms and kicks his feet, which can result in him getting tangled in some of his lines.

I got to hold him for long stretches last night and today and he really liked it. I was encouraged that twice today he got very agitated with his heart rate getting up near 200bpm, but we were able to calm him down without having to give him a rescue dose of sedatives or turn up the ventilator rate. Max and I showed up this morning ready to watch the game with chips, salsa and the works. Max got quite a few comments for showing up in his Giants helmet. As for the game, I won’t say much about that, but it sure was fun to be there with two of my boys. Max held Rudy for about 30 min and that was pretty cool too.

We left Rudy in the care of Nurse Amy and headed home, where we are now. Everyone’s showered and ready for bed and I’m looking forward to the game we’re about to play, but more getting to my own bed thereafter.

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!!!!