Where’s Rudy?

We thought Rudy’s rig was worth documenting as it is quite impressive…Rolf can fill you in on each and every monitor and drip…all I can seem to focus on is the little monkey in the middle of it all. No new major developments this morning, but we are a bit weary with the waiting. The doctors do not see any cause for additional concern, but feel that Rudy needs to get stronger in order to make progress on the ventilator. It seems they’ve made two attempts at progressively scaling back the ventilator this week, but he’s struggled to keep up. So now they’re taking things at a much, much slower pace. He is taking nutrition well, so hopefully this will allow him to get stronger and we would appreciate your prayers to this end. Please pray that he would continue to make steady progress toward breathing on his own so we can get that tube out of his throat. Yesterday he did seem to get pretty upset at times and that’s tough to watch–a full-on baby tantrum with red face and flailing arms and legs, but not a sound coming out. I imagine we won’t be that bothered by the crying noise when it comes.

Mike from Saipan!!!

Look who stopped by to see Rudy today!!!! Mike from Saipan…see our October 9th post entitled “Another Member of the Brian Reemtsen Fan Club” (link below). Mike is preparing to return to Saipan soon and made a stop to meet Rudy during one of his last visits to UCLA. What a treat to meet him…such a nice guy and such a small world.

https://rudysbeat.wordpress.com/2008/10/09/another-member-of-the-brian-reemtsen-fan-club/

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.

Happy 2-week Bday! 10-15-08

Wouldn’t ya know, Rudy spent the entire day yesterday sleeping until 11:30pm!!! Just as we packed up all our bags and started heading out the door for the night, he opened his eyes and was wide awake ready to play!!! So, we put our bags down and hung out a while longer not wanting to miss a chance to interact with him…we enjoyed the 30 minutes we had to celebrate with him on his 2 week birthday before WE began to nod off. Ha Ha Today he is holding steady with no major improvements or setbacks. The longer he stays on the ventilator, the longer it will take to get him off but the doctors remain hopeful. We appreciate your continued prayers for progress in this area…yesterday’s echo-cardiogram confirmed that structurally his insides are sound! Go, Rudy, Go!!!

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.

Two Weeks and Counting…

It’s so hard to believe that Rudy is two weeks old today! The days have blurred together since we’ve been here and it’s amazing how fast time passes. At week two, we find ourselves continuing to wait…to wait for Rudy’s kidneys to kick in, to wait for the ventilator to be taken out, to wait for all the numbers to be where they need to be. They tried taking Rudy off the ventilator yesterday and he lasted about 10 minutes. It was concerning to us but the doctors said it is pretty normal to make short attempts like that to exercise the lungs and make gradual steps toward getting him off completely. It’s getting a little hard for me to watch the patients on either side of us come and go and not get discouraged but we keep reminding ourselves that this isn’t a race and Rudy is doing well for his situation.

Rudy received his first toy this week…a gift from the Child Life Office here at the hospital. He’s now the proud owner of a musical aquarium that we fastened to his monitor rig. It bubbles as the little fish sway back and forth to classical tunes. It’s actually quite soothing and I find myself getting lulled to sleep in the late afternoon right along with Rudy! Ha Ha He likes it alot…he was quite alert the day he got it and when we turned it on for the first time he began to kick and move his hands around and his eyes were fixated on it! It was so fun to see him react to it!!! So now his view is a little less sterile and a bit more fun.

Rolf and I are doing well although I’m a bit steamed because he got mistaken for a UCLA student yesterday when we walked down to the Student Union to run a couple of errands and on Sunday I got mistaken for Max’s grandmother!!!!!! NO FAIR!!! I know I’m looking a bit haggered these days but come on…not to mention Rolf has alot more gray hair than me!!!! Anyway, my ego has taken a hit but my postpartum body is bouncing back quickly. 🙂

Please continue to pray for steady progress and for our patience with Rudy’s timeline. His kidney function is holding steady, but will take time to get where it needs to. As he’s taking breast milk well through his feeding tube, the next milestone will be to get off the ventilator and have the breathing tube removed.

Sleepy Time…

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.

Weekend Pics

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.