Not Quite the Calm Day we Prayed For

Rudy’s been on quite a ride today. The weekend had activity enough, so as we walked into the hospital this morning, Trish offered up a quick prayer for a calm day with no surprises. But that wasn’t to be. It’s now just about six and we’ve sat here at Rudy’s bedside for the longest stretch so far today—about 40 minutes. Rudy underwent three procedures today that had us out of the room for as much as 2hrs each time.

When we came in this morning, he looked plump as a turkey due to infection and the fluids he was retaining. The skin on his torso was stretched taught and shiny from all the stuff in there. Through the night, the doctors were very concerned with keeping his blood pressure high. When we left last night the alarm for low blood pressure seemed to be going off every three minutes and that pattern continued. By this morning, they put him on another dose of paralytics and sedatives so that the team could regulate his blood pressure and ventilation without any movements of his interfering. While this was still categorized as part of the “ups and downs” it was an emotional step backwards to see him immobilized like he was around the surgery.

They decided to insert two chest tubes to drain the fluid off his lungs. The fluid coming from the left side bore evidence of infection, which confirmed the course the team had started with antibiotics a couple days ago. Fortunately, it was determined that the fluid was just “milky” and not “puss-y” (finally some medical terms we understand)—the latter would have been signs of a more advanced infection that would have set things back further. Almost immediately after the drains were placed, his body looked remarkably deflated and both his blood pressure and breathing began to improve. Relieving all that pressure made it easier for his blood to pump and his lungs to work. As we walked back into his room, we were asked to give consent for the insertion of a new IV catheter line into his chest which meant we had to leave again. Unfortunately the nurse was not able to place the line through his little arm veins (something they warned us might happen) after multiple tries, so after a brief return to his bedside it was decided that Dr. Kelly would put in a chest port, so even though we were running out of lobbies to sit in, we stumbled out for another hour or so. This procedure went well and an X-ray confirmed that the line was in the right place so now Dr. Abel and Nurse Katrina are making final adjustments next to me as it’s getting dark outside.

The vital signs and labs are looking good. They’ve backed Rudy off most of the medications and he’s starting to wake up. A few minutes ago, the alarm went off for high blood pressure which is something we haven’t heard in awhile. The ventilator has been turned down to 30 breaths per minute after being above 40 the last few days. The team feels good about how he looks, but we can’t help feeling he looks a bit pale and wiped out considering the day he’s had. Here’s praying for a night of rest and that calm day to be tomorrow.

Clearing Rudy’s Chest

The doctors are watching Rudy closely and just asked us to leave so they could put in some drain lines to get the fluid off his chest. Fighting the infection is the primary focus right now. They have put him on paralytics again so he doesn’t move as that could have averse impact on blood pressure and fluids in his body.

Everyone’s Trying to Catch Their Breath

It’s Sunday evening and the ups and downs this weekend leave us feeling sapped. Rudy was stable through most of last night until about 4am when he had another drop in blood pressure. This one was corrected with a change in medication. He was stable through the morning and then had a serious drop around 11am where the team had to jump in and do chest compressions for about 90 seconds until they got him stable. Fortunately, Drs. Reemsten, Kelly and Shannon were among those present (on Sunday morning—I don’t think they ever bring in a B-team here) and after wheeling in all the equipment for ultrasounds, Xrays and Echos it was determined that the primary cause was a clog in his ventilator that he wasn’t strong enough to clear. His major organs and especially the heart were looked at closely and determined sound. Later in the afternoon, they did an ultrasound on his brain just to make sure the episode didn’t cause any neurological damage. All was determined to be clear and the team continues to feel that these are part of the ups and downs that come with such a complex surgery on a delicate patient.

If this is part of the ups and downs, we’re not sure what it will feel like to experience some full blown complications. Dr. Reemtsen let us know from the outset that he would always be frank with us and tell us clearly if we ever get to a place where circumstances are dire, so there have been a couple of times in the last two days where I’ve reminded a doctor or two of this and been reassured that this is still a matter of time and these kind of setbacks are all things that need to be watched closely, but among the issues that arise with a patient like Rudy. As I write this, Rudy looks peaceful and angelic having had a bath at the end of all the episodes today. After being almost off all of medications on Wednesday, he’s now back on a whole slew of drips for blood pressure, infection, kidneys, blood product and a nice sedative so he can sleep. I’m thinking of asking the nurse to sneak Trish and I a couple doses of our own of the latter.

The two issues that seem to be of primary concern are infection and Necrotizing Enterocolitis (NEC). The latter is a common but potentially serious condition where the bowel doesn’t work (perhaps due to poor circulation) and it can develop into a rupture which would require surgery. As yet, they are taking Xrays every six hours and don’t see any ruptures. So now they address it by restricting food and giving antibiotics. They did discover some infection in cultures taken around his ventilator tube, which could also explain the accumulation of fluid around his lungs, lower blood pressure and general weakness. They started him on a course of antibiotics yesterday afternoon which will hopefully address both conditions.

In the midst of all this activity, the kids came to LA for a visit this weekend. Really great to see them, but I think I have a sense of what prison furlough must feel like. They really are troopers and we are so grateful for Oma and Opa taking care of them, but it’s clear the separation is taking a toll on them. We were able to squeeze in some time for fun on their terms (skatepark, movie, football, play) but it still included a goodbye that came too quickly for us all. We were hoping that I would be able to get back to SB sometime this week as even just a couple days up there could go a long way for them. I still would like to do it, but even a passing conversation with a doctor in the hallway this evening affirmed that we’ll need to stay close by Rudy for the next couple of days.

So please pray that Rudy’s blood pressure would stabilize and that antibiotics would do their work on the infection and the NEC. Pray that he would rest, gain strength and be able to move along in his recovery. Pray that we would be patient—at peace with the timeline for all of this and that we would have renewed confidence for a positive outcome for Rudy after the unsettling experiences of today. Pray that our kids would be at peace at their own level of understanding and emotions of this whole journey and that we would be wise as to what they need and be able to make decisions to leave Rudy if Wilson, Max and Olivia need us.

Slowing the Pace

Rudy had some challenges yesterday afternoon. He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours. His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress). The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile. They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest. So, he’s been on this course through last night and most of today.

The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process. It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator. So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch. There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in. On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning. This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.

I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids. Please pray for them during this time. Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends. They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.

Seeking the Good in Suffering

The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.

C.S. Lewis The Problem of Pain

In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.

I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.

The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.

In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.

As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.

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!