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.

 

Dr. Satou checks on Rudy
Dr. Satou checks on Rudy

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.

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…

 

Another Milestone Surpassed!

Well, it is almost 4pm here on the west coast and I’m wondering where in the world today has gone.  We left Rudy’s room around 11:30am so they could start the “closing up” procedure and Dr. Reemtsen met us in the waiting room about an hour later to let us know he was done.  All remains stable so far…although Rudy is going pee pee, his kidney function right now is still cause for concern but all the really smart people around here seem to think that it is just a matter of time. 

So now we pray against any infection from preventing his healing and we begin to pray for the next hurdle…getting him off the ventilator and breathing on his own.  Once that is accomplished then he needs to start learning how to eat.  He’ll be given my milk through a feeding tube at first, then gradually work his way up to learning how to nurse (we pray!!!) – not an easy process from what I understand.  But that’s work left for another day…today we are just sitting and resting with Rudy and enjoying looking into his eyes every now and again when they open.