Homage to a Hero: Dr. Gary Satou

I can’t get very far in any discussion of what we’re going through with Rudy without soon singing the praises of the remarkable people who have been involved in his care. I am continually impressed by their excellence and their commitment to our family. I tear up watching them work and knowing that they watch him closely around the clock. If you’ve noticed I include a lot of names in the blog it’s because they don’t deserve to remain nameless. I want to remember them. I want Rudy to know them. While I can’t write extensive tributes to all of them (and hopefully won’t hurt anyone by omission), I’d like to create a more detailed record of some of these incredible people

Shortly after learning of our HLHS diagnosis, I found myself in a bit of a vortex of insurance referrals and appointment scheduling. I was trying to educate myself on the condition and also work to get Trish and Rudy to the best care possible. While several people were strongly advocating we go to Children’s Hospital at USC, our insurance network was directing us to UCLA. As I quickly realized that mounting a challenge to the insurance company’s decision could turn into a large battle I only had limited energy and resources for, I decided to at least do some due diligence on what resources UCLA could offer.

A web search got me the Pediatric Cardiology department phone number and a listing of faculty profiles and e-mails. I dialed the phone number and explained my situation to a very helpful woman who said she would consult with the department Chief and have someone get back to me. I followed up with e-mails to a couple of the faculty apologizing if this was an inappropriate means of contact, but I was a parent with an HLHS diagnosis who might be headed their way. Given my experience with medical bureaucracy so far, I didn’t hold much hope for any response.

Much to my surprise, my cell phone rang less than two hours later and I was speaking with Dr. Gary Satou, Director of the Pediatric Echocardiography Laboratory. Ironically, I was standing outside Cottage Hospital about to visit a friend recovering from his own heart surgery and spent 30 minutes pacing the lawn while Dr. Satou set the tone for the many conversations that have since followed with the UCLA team: compassionate concern, straightforward information about this difficult diagnosis, and patient answers to any and every question as they came to me. He said he would want to do a fetal echo himself when we came for a consultation, provided me with his e-mail and encouraged me to make contact whenever I needed to. He said he would be informing key members of the team immediately as he would want them to be available to see us when we could make the trip.

As the time came for the consult visit, Dr. Satou took the lead in getting Dr. Reemtsen and the NICU team lined up to see us. Instead of dealing with the typical appointment process, he set our appointments up himself making our convenience a priority. Our visit that day took close to two hours of his time as he did the exam, toured us through the facility and introduced us to others on the team.

First impressions mean a great deal, especially when they continue on through one’s subsequent experiences. I’m grateful that Dr. Satou was our introduction to the remarkable team here at UCLA and still remember getting choked up during that first phone conversation. Here was someone who understood our diagnosis in all it’s severity and was able to provide realistic hope. As our schedules haven’t aligned of late and we happened not to have been in the room during his usual rounds, we were glad his visit this afternoon. I once again appreciated his concern for us as he broke from the group rounds and took time for an extended visit. I am grateful for his concern for and interest in our family as a whole as he asked about how our other kids are doing. As UCLA is a teaching hospital I am so glad future doctors are able to watch and learn from him, but making no apologies for my own self-interest, I’m more grateful for the attention and care we have received from him.

The Definitive Word on the Polar Bears

Given the attentiveness of the UCLA team to all of our questions and concerns, it shouldn’t surprise me that nurse Joyce took action upon reading my ruminations on the polar bears. The following e-mail from our friends at the Atrium Corporation can stand as the definitive verdict on said bears:

Thanks for your email and hopefully you can forward this to the parent and families who asked the question. The bears in question are generic (not necessarily polar bears, just white because of color constraints in manufacturing). They hail from some original bears from a long time ago (approximately 20 years) that were cute, cuddly, fuzzy and white used in one of our nursing trade shows and drawn as give-a-ways or door prizes. They were also part of a campaign of “give a patient and/or nurse a hug” with a picture of the same bears on buttons. So, you see, bears have been around for a long time on our products and promotion and education materials. We did have pencils and alphabet blocks for a period of time on the pediatric drains instead of bears.

We’ve never considered bunny rabbits or balloons, but the point was to make the complex technology that is part of this “simple chest drain” less “scary” not only for the kids as patients but also for their parents as they see their children vulnerable and sick in the hospital setting. We have had people debate whether the graphics have a place in the highly technical world of medicine and the importance of the chest drain and its function. In essence, such non treatment or care “marketing images” don’t belong. We strongly disagree and have demonstrated our commitment and devoted 25 years to this life saving device and pulmonary science keeping it the highest quality at best price. When was the last time you had a performance or functional issue with an Atrium Chest Drain?

Equally important from that marketing point of view- is that the decision makers, buyers and procurement system of the hospital could care less about our bear graphics in influencing their technical and cost decision. So the end receiver of the technology- the patient may or may not appreciate the graphics design but they were not involved in the decision to use or buy the device. In almost 25 years, I can count on one hand the number of people who have expressed any negative feedback on the graphics; on the positive feedback side we’ve had overwhelming response of the human connection and comfort the bears bring to the family and nurses using or viewing the chest drain.

Most importantly, it’s not what’s on the outside that matters, it’s what goes inside and how that simple plastic box from Atrium Medical does its job day in and day out, without compromise, without problems, 60 parts that work flawlessly over a Million times each year for you and your patients. That’s not marketing or sales, that’s engineering and quality. When you combine that with the window dressing it’s a pretty impressive package, don’t you think?

Thanks again for your question, keep doing what you do for your patients, we all know it’s not getting any easier and thanks for letting us play a role in their recovery and health. We love it!

Ted Karwoski

COO

Senior Vice President of Research and Operations

Atrium Medical Corporation

5 Wentworth Drive

Hudson, New Hampshire 03051

I’ve thanked Mr. Karwoski for his input and stand firm in my opinion that Atrium is by far my preferred brand of chest pump. However, it does seem a bit denigrating to reduce these remarkable creatures to “generic bears”—they’ve taught themselves to fish with poles—at least dignify them with a species! That said, I’m glad the company focuses more on the internal workings of their product than the graphics outside, though if they ever reconsider it, I’ve come to think that an elephant or perhaps an octopus would be a more friendly representation for this suction-based device. If they’re receptive to my free input, I’ve also been kicking around ideas for a slogan (“Baby, do we ever suck!”), but perhaps it’s best to stick to my current line of work. All fun aside, thanks Atrium for a great product that allowed Rudy’s chest to drain so quickly that it could be closed up ahead of schedule and the threat of infection greatly minimized. I have to imagine there are countless little gizmos attached to Rudy right now quietly doing what very intelligent people have designed them to do so that he can live. So many people to be thankful for.

The words of Jimmy Buffet ring true: “If we couldn’t laugh, we would all go insane.” In the midst of the seriousness of Rudy’s situation, we are grateful for things that lighten the burden. This morning, we received encouragement that the creatinine count dropped from 2.4 to 2.2, so his kidney function seems to have reversed its trend. Nurse Christine washed him all up and after moving the blood pressure cuff to his leg was able to put him in a shirt for the first time after routing all of the lines and tubes appropriately. He’s more and more expressive each day but it’s bittersweet to watch his face scrunch up and his legs kick in a crying fit but have him unable to make a sound. I can’t imagine we’ll complain about any noise he makes once they take the chest tube out.

Measurement by Little Numbers

More than a few visitors have been given a start as they come into Rudy’s room and see his small six-pound form surrounded by a wall of gauges and machines that resemble a smaller version of Mission Control. This weekend I was struck by the miniscule things we’re watching for. As we’ve been praying for his body to drain fluid, every one was encouraged by yesterday’s negative balance of 30cc over 24 hours. I got to thinking about it and did some conversion when I realized that this converts to about two tablespoons, but its progress. Knowing this, we got encouraging news this morning when we discovered that the negative balance was 130cc this morning (8.79 tablespoons). Four Nephrologists (kidney specialists) have been by in the last two days as the team wants to keep a close eye on what’s happening there. Rudy’s creatinine levels are about 5 times what they should be (2.4 vs. 0.6) but fortunately nowhere near the neighborhood where dialysis would be necessary (that’s when they go over 7.0 or so). Keep the rain dances going as there isn’t much concern as long as he keeps peeing. When he’s a teenager, I’m sure he’ll be really pleased to hear us tell stories of how intently we watched that little tube for signs of anything yellow.

A number of other small developments have taken place as part of the slow process of getting him past the surgery. They removed the arterial line from his navel as they think it may give the kidneys better blood flow and make them more productive. They tried to start another arterial line in his arm, but had difficulty getting it situated in his tiny little arms so they decided to go without it. They have freed up both of his hands so he can wiggle them a bit. They’d love for him to move a bit as it might stimulate the tissues and get them to release more fluid. They started feeding him yesterday as he hasn’t gotten any protein yet from the intravenous solution he’s been getting since he was born. Again, this can stimulate more movement. The 1ml drip of Pedialyte yesterday afternoon was increased to 3ml overnight and at noon today they felt he was doing well enough that they started him on breast milk (which we’ve been dutifully bottling up and freezing—I can’t imagine he’ll get through it all as whatever freezer they’re putting it in has to be close to capacity and at this rate he’s only getting about 4 tablespoons a day.) They turned down the ventilator yesterday to 12 breaths per minute just to see how he would do and haven’t had to increase it since. He’s been breathing over it most of the time without much effort so this may be the process of phasing it out (but I don’t want to speak too soon).

It’s good to see Rudy moving about a bit more. He still has his eyes closed most of the time, but his feet and hands wiggle regularly amidst the constant bobbing of the tubes across his chest as he breathes in and out. This morning, as the nurse was adjusting his position, his brow got wrinkled and his veins bulged out, giving indication that he would have been hollering up a storm but for the tubes down his throat. Certainly a pathetic site I’ll add to the list of things I pray he wouldn’t have to go through, but we see the positives for what they are—this is the first time he’s seemed able to even communicate emotion like this.

It’s hard to believe surgery was a week ago and Wednesday it will be two weeks since Rudy was born. Trish and I have gotten into a bit of a rhythm here at the hospital and we’re usually surprised at how fast the days pass. As you can tell, I occupy myself with learning about all the gauges and machinery here in the room. As I’ve been known to investigate the construction of buildings we visit and apply this knowledge to my remodeling projects at home, I think Trish is concerned that I might be planning to construct an ICU in our garage (she’ll mock me until she sees that home office deduction). My curiosity has me researching unfamiliar terms or converting metric units into tablespoons on my laptop so that I can then employ my new knowledge in the conversation the next time the doctor comes around. I feel a bit like the tag-along little brother the doctors humor; proud to display my understanding of terms they likely learned in high school biology.

We enjoyed some time with Wilson, Max and Olivia this weekend who seem be doing as well as can be expected. Yes, they’d love for us to be home and the good bye wasn’t easy, but it is good for them to see Rudy and perhaps glean why it’s important for us to stay with him for the time being. We continue to be so grateful for our family and friends who are walking with us through this challenging time. It truly is something navigable only one day at a time—before we know it, weeks pass and we can only trust it’s bringing us closer to home.

We’d appreciate your continued prayer for Trish’s dad as he came home from the hospital over the weekend, but is in significant amounts of pain. Please pray the doctors get the right combination of meds established and Dick will begin to experience relief from the pain and comfort as he recuperates. Also, please pray for stamina for JoAn as she cares for him at home. It continues to be so hard to not be in Kansas with them but we are thankful for Trish’s brother and sister-in-law, Steve and Michelle, who are close by to lend a hand and for Trish’s oldest brother, Rick, who is flying to Kansas this week from Indianapolis for a five day visit.

Anxiety on the Plateau

Last night and this morning were challenging. While Rudy seemed peacefully asleep most of the day yesterday, late in the evening and this morning he took on a bit more of a troubling appearance. While his kidneys are functioning and the team feels it is more a matter of time than a cause for alarm, he hasn’t been very alert for awhile and it’s hard to tell whether he’s awake or asleep–his eyes are puffy and he doesn’t open them very far. When he does open them the look seems a bit more pained as opposed to the quiet curiousity they used to have. This morning when I came in and got close he got more animated, the guages picked up and shortly thereafter a small tear formed out the side of his left eye.

His lower torso has a lot of extra fluid and shakes as he hiccups and makes raspy snorts out of his ventilator. Not the most comforting thing to have to sit by and watch. Dr. Reemtsen and Dr. Levi have both already stopped in (on Saturday!?) with the same message. We’re on a plateau, things are progressing, it will just take awhile. They are going to start Rudy on a different diuretic to see if that furthers his progress.

Emotionally, it’s been a bit challenging for us. After the drama of surgery earlier in the week and Rudy’s initial progress, it was easy to get lulled into thinking this was going to be smooth sailing, but today we’re encountering the reality of this process and the challenges of enduring it. Thanks for continuing to pray. We’re excited that the kids will arrive shortly and that Oma and Opa will be able to sit with Rudy for awhile. We do wish that the kids would be able to see the wide open, curious eyes we got to see earlier this week, but we’ll have to play that by ear.

Rudy’s Day of Rest

Today is one of those gorgeous days in LA—in the 70s with a refreshing autumn wind. I had to leave the hospital as I suddenly realized I was driving in an uninsured vehicle. I bought a new truck, sold the old one and was in process of doing all the transfers when Rudy decided to come. It just struck me last night that I never bothered to inform my insurance company of this, so this afternoon, once I remembered where I parked, I had to go back and retrieve the registration to give my agent everything she needed. This rather mundane chore gave me a chance to be outside the hospital during daylight for a bit and it was so nice I took a long way back through campus and the botanical garden just to enjoy it for a bit.

Back here in the room, things are peaceful. While Rudy has flown through several of the milestones to date, his progress seems to have slowed a bit today. Yesterday there was talk of removing his breathing tube, but today’s chest X-ray showed a significant amount of fluid in his lungs and around his midsection so they’d like to see that drain. This isn’t really a setback just a matter of a bit more time. He’s sleeping a lot today and even though it’s been quite a week, looking at him we’re reminded that he is still in a very delicate state. Even though we’ve gotten used to being in this place, it’s still the intensive care unit and the patients are by definition in very acute situations. Please keep praying for fluid to leave his body (feel free to use the terminology you think God would find most appropriate, but basically he needs to keep peeing).

He’s completely off the paralytics now, so while he might still look motionless to most eyes, as we’ve been closely focused on him for the last week we see all the little twitches and involuntary movements that weren’t there before. He’s very sleepy today and has opened his eyes lazily a few times today, but not for long. Maybe that’s because we get up in his face any time we see them open and he just wants some space. A couple of times he opened and closed his hands a bit and wiggled his forearms on the pillows. If I put my pinky between them and the pillow he’ll fumble for a bit and try to hold on with his long little fingers. That’s cool.

The one thing I notice missing from the room today is the cooler with the emergency blood supply that was standing in the corner. Looks just like one of those Colemans you take on a picnic except for the bold type telling you what’s in there. Though the staff usually calls for individual delivery of blood when they need to do a transfusion, they do keep a supply right next to an acute patient’s bed they can get to right away if there’s an emergency. Even though no major equipment was disconnected today, we’ll read it as a positive step that team felt it was safe to remove the blood cooler.

I don’t think I’ve mentioned that Rudy was actually the first pediatric CTICU patient on this ward. This hospital is only a few months old and it takes awhile to get all the specific licensing done. Up until now pediatric cardio-thoracic cases had to go upstairs with the adult heart patients. The plan was to eventually have a wing of beds for CT cases with dedicated nurses within the pediatric ICU so that this whole section could be for kids and their families. Even last Friday, Dr. Reemtsen told us we would be upstairs, but some things seemingly fell together and on Monday we found out that we would be staying here. No difference at all in the care, but it does make for a unique community of families in similar circumstances. It seems that most of the patients have come and gone since we’ve been here, but the long-term cases tend to find each other. Two doors down from us there’s another Santa Barbara family with a two-month old that had to be airlifted here on Monday and undergo several hours of surgery yesterday. So we check in with each other, commiserate and swap war stories we wish we didn’t have to claim as our own.

We also had to say good bye to our new friends Leilani and her sister-in-law Lauri today. We were fortunate enough to be seated next to each other in the surgery waiting room on Monday and got to experience the surreal adventure together. As if sitting there in angst as our little baby was having this risky surgery wasn’t enough, we endured the irritation of neighbors on their cell phones and blessed volunteers who mispronounced just about every name they had to call to the desk (so three families could be alarmed at a time until it was finally straightened out which one was being summoned). Throw in an active little toddler pulling the fire alarm and I was about ready for my own heart surgery. Through the morning, our pleasant hellos progressed to exchanged smirks, raised eyebrows and nervous laughter as we tried to hold the neuroses at bay. We finally got to introducing ourselves (so at least we’d have that behind us when Allen Funt came out from behind the planter to point out the Candid Camera) and we discovered that Leilani’s husband and Rudy were on bypass at the same time. We continued our visit over lunch next door and managed to keep in touch through chance meetings in the hospital lobby. We were so glad to hear that they were discharged this morning. Good health to you, Mike! God bless you all and hope you return to the ocean soon. If you ever get to the anchorage off Goleta, dinner at the Beachside Grill’s on us!

Tomorrow, the kids are coming to stay the night. After some of the initial bumps, they’ve been troopers and have had a good week. Hopefully, Rudy is resting up for his day with them. We’re excited to see them, so in case updates are few this weekend, you’ll know it’s cuz we’re having fun!

E-mail reminder

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Another Member of the Brian Reemtsen Fan Club!

While doing some googling today, we came across a site of another person who has been in our favorite heart surgeon’s care. Not the usual pediatric patient, but a great account of the quality of the team here at UCLA. We’ll write a tribute of our own soon!

http://saipanscuba.blogspot.com/2008/09/two-week-follow-up.html

To read what Mike wrote about Rudy, click here:

http://saipanscuba.blogspot.com/2008/10/putting-it-back-into-perspective.html

So glad that the same team giving our kid a chance at life is giving Mike’s kids a chance to have their dad! The internet rocks.

A Quiet Day

I’ve been enjoying a quiet morning here sitting with Rudy. Actually it’s now already afternoon—time kind of mashes together during this process. Yesterday evening I crashed. I think the unique patterns of sleep and stress caught up with me a bit. So, I stretched out on the chair bed at the back of Rudy’s room and checked out. Even with all the lights on and people coming regularly and having discussions about his condition, there’s a rhythmic hum from all the equipment that fades it all together and makes for a bit of sensory deprivation.

Rudy progressed well in the wake of his chest closure yesterday morning and the team has continued the ongoing balancing process making sure that blood is getting evenly distributed throughout the body, that the blood gases stay in check, that heart and breath rates are where they should be, that liquids are draining properly…so many details monitored by so many gauges and switches. I think I count ten different lines going into his body and two coming out. Throw in the harness of breathing tubes and the various wires to monitor heart rate, temperatures and oxygen saturation and it’s a very involved rigging. I’ve noticed the nurses regularly give attention to this, rerouting lines here and there and relabeling all the lines at both ends to make sure there’s no question what’s what.

This morning when we came in they had removed the headband that was monitoring fluid levels in his brain so I’m looking at a nice broad expanse of forehead. It’s got a nice warm color, but I hope there’s a chance he’ll get a bit of a wash today as I can see some tape residue from the band and he looks a bit like a middle-aged man whose comb-over is beyond help at the end of a humid day. The team has said a few times that “he’s negative” which is actually positive (we’ve learned to not get immediately panicked by anything we hear). They track all of the fluid going into his body through all these tubes and then subtract how much is coming out. If the number is negative, that’s good as it means the kidneys and other functions are performing and he isn’t retaining liquid anywhere, though looking at his little body with his long skinny arms and legs don’t give much evidence of places he would store it.

He needed a transfusion this morning as there was concern about where his blood levels were headed. His oxygen saturation was getting down into the low 70s so among other measures they increased his blood volume. The green number reads in the upper 80s now so that’s a good thing. This falls again among the many things the team does proactively to make sure balance is maintained and we continue to be grateful that his condition hasn’t taken a turn such that they need to chase after something.

Rudy’s opening his eyes wide and is looking around quite a bit today when he isn’t sleeping and every now and again starts to gnaw and try to suck on the breathing tube. They’ve got the ventilator turned down to 16 breaths per minute, but he’s getting around 45 which means that he’s breathing on his own over the ventilator. They may try to remove the ventilator as early as tomorrow, but I have to keep reminding myself that, as encouraging as progress is, this isn’t a race of any kind. Just now they rolled Rudy’s head right up and now his eyes are wide open and he’s really putting those eyes through their paces—we’ll post the picture shortly.

We just took a quick lunch break and while we were gone the number of tubes was decreased by one as they took out the chest tube that was draining fluid from his incision. Nurse Cheryl gave him some happy medicine and he’s sleeping comfortably now. So now there’s one less piece of equipment at the foot of the bed. Over the last several days, I’ve had good time to contemplate the Oasis Dry Suction Infant/Pediatric Chest Drain manufactured by the Atrium Corporation. The team would regularly come in to check the tube and how much fluid was going into the reservoir over time. Eventually the flow lessened to the point where it’s not necessary anymore, so that’s the milestone for the day. In my time of contemplation, it did strike me as odd that in addition to all the medical language and the measurement gauge on the chest drain was a prominent cartoon of two polar bears fishing on a small tropical islet complete with coconut palm. Not sure what they have to do with the device’s purpose or if some marketing team testing graphics decided that this would be a more saleable design than bunny rabbits or balloons. I was intrigued enough to ask Dr. Harrison (the attending) when he came by yesterday. He admitted that in all his years here he has never noticed the fishing bears on the chest pump, but felt that they looked more like regular brown bears. Totally unhelpful. Why are they white then? Why would they be in tropical latitudes? Why would they be fishing with bamboo poles and bobbers instead of their paws? For the first time I saw a member of the crack UCLA team stumped and I suspect he’ll think twice before offering his usual “Do you have any questions?” at the conclusion of his visits.

So, we’re grateful for the peace of this day. The kids check in regularly by phone and we are so grateful for Oma and Opa as well as the La Patera school community embracing them. We’re making plans for them to come visit this weekend and stay the night. Trish is on the other side of Rudy’s bed addressing birth announcements and I would suspect will have them in the mail by the weekend. After arriving in the room this morning, she divulged to me that she wished she brought along her Swiffer as the smudges on the floor are really bugging her. I’m wondering if a stop on the Psychiatric Unit downstairs might be in order…

Closing Time!!

Trish and I arrived at the hospital just 15 min ago and were let into the CTICU by Dr. Reemtsen who said he was going to be back in 30 min to close Rudy’s chest. Much quicker than we expected but the team is so pleased with his progess that there’s no reason to wait. Despite how it sounds, this is something they’ll do in his room and will last about 30 min. They should be starting in 15-20 min.

Torn Between Three Loves…

We slept last night like we haven’t in awhile. We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school. I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.

Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case. Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable. After the way last night ended with Livy begging us to come home, it added another place to those we wish to be: with Rudy, with our other kids, and now in Kansas with Trish’s family. Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.

The hospital staff quickly became aware and though we got quite a bit of empathy and kindness. It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them? It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown. You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what. There are powerful emotions on this journey. Trying to stuff them could likely make you crazy.

In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff. Maggie the Cardiology Fellow likes to give a “Rud-ee! Rud-ee! Rud-ee!” cheer when she comes in to see him. Everybody thinks he’s really handsome and the medical folks say he’s a model patient. His vital signs continue to be perfect and every set of labs is progress in the right direction. The big concern today continued to be that he would start peeing regularly. Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk. The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing). Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door. Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.

We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold. He’s got them on now and we’re torn as to whether his feet are cuter with them or without them. They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue. Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case. Especially now that he’s peeing, he looks leaner than he did in the birth pictures. Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down. Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA. It’s not as bad as one might think, though Trish hasn’t been curious enough to look. There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.

The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit. When we come close, hold his forehead and start talking they slowly open up to about halfway. If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue. I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff. It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.

It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night. Monina is tonight’s angel so we’ll rest easy. Thanks, Jesus, for guiding our little boy today. As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.