Reason to breathe easier…

Rudy thought he had breezed through his regular checkup with the pediatrician today.

smiling at Pediatrician

Then things took a turn for the worse.

after shots

It’s relatively minor compared to all the other trauma he’s experienced, but no baby likes those blasted shots.  (I know you’re probably picturing gut-wrenching screams, but remember–as much of a tantrum as this looks like–it was dead silent because of Rudy’s trach.  That still surprises me every now and again when he gets really upset like he did today.)

But it wasn’t too long before he was the picture of resilience.

Smiling after shots

He’s got good reason to smile as Dr. Abbott gave him a big thumbs-up after his exam.  He’s continued to put on weight–in fact, we think he set a new record by putting on a whole half pound in the last week.  So he’s up to 17 1/2 lbs at a strapping 27 inches tall.  His lungs sounded very good and clear.  There’s significant relief for us in this realm as some of the docs decided it would be wise to do a test for cystic fibrosis because of some of the challenges Rudy’s been having with breathing and secretions over the last month.  The team at UCLA did a genetic test last winter which ruled out everything but one minor anomaly.  The consensus was that this probably meant it was 98% sure that Rudy didn’t have CF, but given the concerns about his respiratory function it seemed wise to be even more certain.  So this week he got the sweat test which came back negative as well.  Can’t say it didn’t produce a bit of anxiety for us to even have to run a test for another major health issue, but it’s great to have this ruled out.  It gives us even more hope that Rudy will one day be able to breathe on his own.  There’s not a major condition blocking him; he just needs time to get strong enough to go without the trach.

There are probably a few factors we can point to that seem to be helping Rudy breathe better.  Getting bigger and stronger through his nutritional regimen certainly helps.  There have also been some medication changes that seem to keep the secretions at bay.  The cooler weather might also play a role–he did seem to have a hard time a couple of weeks ago when it was hotter in these parts.

We also think his spirits were boosted by a visit in our home from Nurse Aliza, though he probably had a hard time recognizing her without her blue UCLA scrubs.

nurse aliza

But I humbly suggest that the most significant development has come from another fit of innovation.  There has been periodic mention made about humidifying things a bit for Rudy as a 2l/hr oxygen flow can dry patients out.  You might recall that we had a compressor from home health that gave him mist, but no matter how we tried to rig this to run in tandem with the oxygen concentrator we couldn’t keep his sats anywhere near where they needed to be.  A couple of weeks ago, it got tiring to watch him fight with such thick secretions so I started to think back on some of the setups I studied for days on end back in the ICU.  I suspect the “right way to handle this” would be to work with the home health company on this, but I wasn’t up for the prospect of navigating phone trees, getting the necessary order from the appropriate doctor and then arranging and waiting for delivery.  A second approach would be to find it on the internet (which was quick, easy and probably half the cost of home health), but it seemed that even $30 for a rather simple contraption that would take 5 days to arrive wasn’t preferable.

So, I went for a third option, which involved grabbing an empty saline bottle (which we have in good supply thanks to the last time I took matters in my own hands), getting some drip irrigation tubing from the garage, and spending 89 cents in the plumbing medical supplies aisle at OSH.  Less than an hour later after a bit of drilling and cleaning, the hum of the concentrator was accompanied by the pleasant bubbling sound of Rolf’s Wonder Humidifier taking that nice oxygen and giving it a sweet, sterile bath before it made its way to the mask.  Rudy thinks it’s yummy.

I held off reporting on this exciting innovation right away even though it seemed his secretions became much more manageable in short order.  They’ve stayed that way ever since we started using the RWH, so it’s a keeper.  Anyone know a good patent attorney?  Between this and the smashing success of the PRS, I’m not sure how much longer I’ll be needing my day job!

Rolf's Wonder Humidifier...you can say "I knew him when..."
Rolf's Wonder Humidifier...you can say "I knew him when..."

Ask not what your elementary school can do for you…

Fans of Rudy often comment on his winning charm and determination.  This is a trait shared with his siblings, something which was fully evident today.  Among the heightened activity this week, big brother Max decided to run for student council vice president of La Patera Elementary School.  His campaign platform probably garnered many votes by virtue of its ambitious agenda on many of the key issues:  the pursuit of happiness (more money for sports equipment); the First Amendment (establishment of a school newspaper); health care (a hand sanitizer in every classroom) and personal privacy (higher bathroom stalls).  But recognizing that some voters might base their decisions on style over substance, he borrowed from McDonald’s to create a creative marketing campaign for his posters–“Big Max…I’m lovin him!”   The week of pressing the flesh culminated in the campaign speech he taped for the school’s in-room video system.  Here’s a copy of his dress rehearsal at home.

As you might already have inferred by virtue of the fact that I’m posting it here, Max phoned me happily as soon as he got home from school to report that his campaign was successful.  It brought to mind my own glory days in the realm of politics (Student Council President of Madison High School back in 1985).  Perhaps with the sun setting on Hyannis Port, a new Camelot begins…

Happy 11 Months!

We’ve reached another milestone…Eleven Months!  Trish’s computer has been sidelined briefly with a virus, and with it some cool pictures that would make for a celebratory post, but we certainly didn’t want this day to pass without some acknowledgement.

Unfortunately, Rudy had to mark this day with an unscheduled visit to the pediatrician.  His lungs have been pretty congested for the last couple of days–or “junky” for those of you who deal better in medical lingo.  He’s been a bit uncomfortable, but I’m not sure if he’s worse off than his parents who’ve had to suction him about every 20 minutes around the clock.  On the immunologist’s recommendation last week, we did change up a few things with his breathing treatments, but perhaps this was too abrupt.  So, we’re going to do a bit more gradual transition introducing Singulair to abate secretions and more slowly wean the inhaler treatments.  Breath easier, Rudy, Mom and Dad would like more sleep.

Due to the equipment issues I don’t have any pictures of Rudy handy, but while we’re celebrating birthdays let’s welcome Alyssa Johanna Geyling, Rudy’s new cousin who was born yesterday.  In addition to her stellar good looks, she also demonstrates remarkably good taste in fashion accessories at a young age.

The first thing Cousin Alyssa put on was her Rudy bracelet!
The first thing Cousin Alyssa put on was her Rudy bracelet!

So we don’t have any new pictures of Rudy ready to post right now (but we have a sure classic coming), but Wilson and Max thought it would be cool to post some skateboarding pictures from the last week of summer vacation on Rudy’s Beat.  What does this have to do with Rudy or HLHS?  Absolutely nothing.  But they are cool.

Wilson gets some air!
Wilson gets some air!
Max gets his grind on!  (Note the wrist bandage...Rudy isn't the only one with scars)
Max gets his grind on! (Note the wrist bandage...Rudy isn't the only tough guy in the family)

If skateboarding is cool, how much cooler is finding a taratula at the skatepark?

Hope all you want...that thing isn't coming home with us!
Hope all you want...that thing isn't coming home with us!

While we were in the neighborhood, I humored my wife’s recent obsession with Micheal Jackson coverage by making a swing by the Ranch.

Wilson thought we were going to the Jimi Hendrix Ranch.
Wilson thought we were going to the Jimi Hendrix Ranch.

Hard to believe school’s back in session.  We made the most of the summer.

Sunday in the Park

The parenting books told us we’d have to wait about 15 years before Rudy acted out but, once again, he has his own timeline:August 10 021

Come to think of it, Olivia seems to be about ten years premature with her adolescent rebellion.August 10 012

We’re wondering if there’s cause for concern.  She doesn’t appear to be hanging out with the wrong crowd…

Water Race

Then again, they do have some destructive behaviors…Pinata

But that’s all part of the fun of celebrating your 7th birthday!

Bday Cake

Happy (early) Birthday to Rudy’s big sister!

Pumping Away!

Seeing as we’ve gotten a number of inquiries today about how our cardiology appointment went, I’m posting a quick update before I close up things here at the office for the week.  For all of you in Santa Barbara…”Viva la Fiesta!”  May you enjoy the weekend of revelry…or be nerds like us and stay far away in the serenity of your backyard.

As Trish shared, it was ironic to be at Dr. Harake’s office exactly one year later.  I remember sitting there on the first Thursday in August of 2008 still trying to stop my head from spinning in our new reality, watching unknown blotches flash and pulse across the Echocardiogram screen and desperately wanting every last one explained to me.  A year later and I still don’t have the foggiest idea what the blotches mean, but I know enough to sit patiently in the dark for the explanation that will come from a man who has gone from being an expert stranger to a caring guide.

Rudy has always sat still through the exams, but I discovered this was likely more a product of his delayed development than amenable behavior.  Yesterday he discovered the crinkly paper covering the table and was engrossed by the way it ripped and rustled all through the exam.  The first positive indicator was his weight, now up to 16lbs, 12oz, so the positive trend here continues–the bigger he is going into the Glenn, the better.

His sats read in at 82% which is also very positive.  We haven’t tracked things too closely, but at the time we came home from UCLA it seemed he was more often in the low 70s.  We’re going to watch this more closely as it could be a sign that his lung function is improving.  Aside from this, it’s also a sign that there is not an urgent need for the Glenn.  One of the things the docs will be looking for is for the sats to drop to about 65% and stay there regardless of how much oxygen he’s on, which means that he’s outgrowing the Sano shunt they put in during the Norwood. His heart will then need the Glenn so that it’s configured for better flow.  Understand?  I knew you would.  Someday I’ll post some good diagrams of all these operations so we can all become HLHS geeks together.

Lastly, the doctors always check the right valve to make sure it isn’t leaking.  There was some incidental leakage early on with Rudy, but it looked very good yesterday.  On previous echos, Drs. Satou and Harake both mentioned that the pumping on the right ventricle didn’t look as “snappy” (sorry for more jargon) as they would hope, but yesterday’s looked much stronger.  As Dr. Harake thought this was likely in response to meds, he adjusted things a bit further to see if this trend will continue.  Keep pumping, Rudy!

In sum, it was a very positive visit that has us grateful for Rudy’s stable progress.  We’re always aware that things can change quickly on this journey, but for now we’re glad that our next visit to UCLA doesn’t seem imminent.  So we’ll keep enjoying the summer!

From the looks of the picture Trish just e-mailed me, it seems that there’s more fun being had at home than at the office (hard to believe considering the nutcases I get to work with).  While one of the simple joys of my life is a Friday where I can go casual, Max does not seem to ascribe to this.  Trish wondered why the kids were being so quiet and then discovered them in our closet with the door shut.  Here’s what they do for a good time:

MaxSuit

Am I angry that he tried on my clothes without asking?  No.

Am I angry that he looks better in them than I do?  You betcha!

Time to go home and unleash some Daddy discipline.

10 Months of Adventure

Rudy at 10 months with two favorite toys!
Rudy at 10 months with two favorite toys!

We had a very calm weekend around Goleta this weekend.  So calm, in fact, that we didn’t even remember until late Sunday that Rudy’s 10-month birthday was on Saturday.  My convalescence had me begging off from any adventures for the short-term, but Rudy has had some notable ones of late to report.

Rudy had such a good time on his trek through the mountains with Nurse Aliza, that he was eager for more adventures.  From the majestic Sierras, he headed to the idyllic wonderland that is Milwaukee where Donna took him to the Circus of America Parade, where 250 horses pulled wagons carrying the animals down the route (like those prima-donnas can’t walk?).  Look closely, you’ll see him there on Donna’s arm.

Rudy thought the giraffe was cool; the clown creepy.
Rudy thought the giraffe was cool; the clown creepy.

Rudy came home and wondered what all the hype was surrounding Comic-Con 2009 (as did we).  Fortunately, two sweet nerds friends, Micheal and Cheryl, were glad to take him along.  His big brothers are green with envy at how he got up close and personal with some of their heros.

Rudy fights with half a heart; Iron Man needs an Arc-reactor (wimp!)
Rudy fights with half a heart; Iron Man needs an Arc-reactor (wimp!)

Superman sports a tribute to a true super hero!

Kryptonite, baby!
Kryptonite, baby!

Cheers Rudy!  Here’s to many, many more months of adventure!

Happy V-Day!!!

This may be a post to file under “too much information”, but seeing as we’ve posted 400 times in the last year it’s probably way too late for that.  We had another medical procedure in our family today, but this time it wasn’t Rudy.  While some of the folks in my office thought I was taking advantage of a 3-day weekend, my day started off with a 30 minute procedure on this table.Dr. Table

 Very quick and efficient as far as doctor’s appointments go…yet permanently life-altering.  Not sure if we’ve mentioned here before that a heart condition was arguably only the second biggest surprise surrounding Rudy.   His penchant for beating the odds was there from the beginning given his deft maneuvering past countermeasures deemed 98% effective.  But 2% probability is still probability.  Shortly after Livy was born we had discussed taking more permanent steps, but that fell in a crack somewhere on “the list” between going to the dentist, updating the will and cleaning out the rain gutters.  But trust me.  We’re done.

Perhaps our family’s immersion in the medical world this past year has us in a place where such a procedure is discussed with surprising candor.  A generation ago I suspect Daddy would have just been feeling under the weather for a day, but I learned that Trish felt differently when the kids greeted me in the driveway a couple days ago with giggles and all kinds of curious questions.  Amazing how brutal things can sound when medical terminology is replaced with the lunch-table vernacular of elementary school boys and a conception of surgical precision has seemingly not progressed much past that of a Civil War field hospital.

In the consultation prior to my procedure protocol demanded that the doctor explain the finality of what one is about to undertake and assess whether the patient truly feels he is done procreating.  In my case, his quick glance at the medical history alleviated any need for further questions (“Let’s see you’re 42, kids aged 12, 10, 7 and……..9 months!  Sign here!”)   

In one of the brochures they gave me to read, I was advised to take stock of my current offspring and determine whether my life would feel incomplete without any more.  I don’t think it was to be read as a joke book, but I did find it funny.  I was urged to take some time and take stock of the situation and my hopes and dreams.  I have to confess, I didn’t do much of it then but this weekend of reclining and recuperating also affords some time for reflection.  Final score:  3 boys, 1 girl.  In terms of the Geyling family, amidst siblings who appear marginal in their ability to produce male progeny, I have done my part in producing three capable of carrying on the name.  In terms of the species, I have done my part to propagate exceptional traits in my offspring—one of intelligence, creativity and rhythm; one of athleticism, charm and humor; one of grace, beauty and artistry, and one with matchless tenacity and perseverance.

You’re welcome! 

 

PS.  Note to any dinner guests in the near future—you might want to decline the peas.

A Tale of Two Weekends

Our family had two eventful weekends in one.  First, Trish and Olivia got to go out to Kansas for a mini family reunion with the Wilsons.  The highlight was joining Grandpa and “Team Wilson” for a 5k run/walk.  Rudy joined along in spirit as G’pa Dick competed with a pair of Rudy’s “running socks” pinned to his number.  Team Wilson dominated the course with Wilsons in the front of the pack, holding steady in the middle and bringing up the rear throughout the race and EVERYONE finished with a smile on his/her face.  G’pa won bragging rights as the #1 male walker of the day with his good friend Bob coming in a close second!  Olivia was determined to walk too and finished despite the heat and humidity…not quite sure what she thought of humidity (ha).  She also experienced her first Midwest thunderstorm AND the thrill of catching never-before-seen lightning bugs!

Livy stretches out with Grandpa and cousins Rachel and Emma before the race
Livy stretches with Grandpa and cousins Rachel and Emma before the race

 

Thumbs up at the finish line!!!
Thumbs up at the finish line!!!
Another win for G'pa Dick!
Another win for G'pa Dick!
Team Wilson
Team Wilson
A rare "sibs pic" with big bros Rick and Steve :-)
A rare "sibs pic" with big bros Rick and Steve 🙂

Back here in Goleta we had a full weekend of our own.  Before I get into the details I have to mention the Rescue Mission graduation on Saturday night.  We celebrated the achievements of a dozen heroes who completed their twelve months in the recovery program.  Thanks Heather, Jessica, Kelly, Nanci, Rachel, Andrew, Ben, Cal, Edward, Jay, Morris, and Sergio for being examples of how intimidating struggles are best approached by leaning on the people God has placed around you and by taking things one day at a time.  I love what I do in that it gets me a front row seat to watch lives transformed. 

Stepping back from the profound, Wilson and Max declared this weekend to be a “DUDE-CATION” as all the females in the family had vacated the premesis.  I was glad they took time to brief Rudy on the elaborate wild-man rites undertaken when boys find themselves separate from girls for extended periods of time (because I needed a refresher).  Turns out there’s quite a bit of freedom to be taken with bodily functions and noises–and more extensive and detailed conversations regarding them than I ever thought.

On a true dude-cation, all meals must  be eaten without utensils.  Considering there was toast and sandwiches in good supply, this was easily done, but I thought there would be an exception made when it was time for lasagna.  Turns out Max’s commitment runs deep, even when the melted cheese singed his fingers.

Max Lasagna#1

 

max lasagna #2

 

 

 

 

 

 

 

 

You laugh a lot on a dude-cation, which is always welcome.  True dudes also laugh in the face of danger.  While anyone can enter the pool the conventional way, it’s much more fun to do something daring:

Wilson Roof Jump
Wilson
Max Roof Jump
Max

OK, I know.  Responsible parents wouldn’t let their kids do this, but after you let them roll your six-day-old down into the OR for heart surgery your notion of what’s dangerous gets altered.  Not to mention, it just plain ROCKS!  Rest easy, there’s no picture of Rudy engaging in the ceremonial Dude-cation roof leap…yet.  I guess you’ll be sending your kids to someone else’s house when you go out of town for the weekend.

Rudy Climbs a mountain

Even though some kids with heart defects can’t go to upper elevations, Rudy went on a high-altitude adventure (kind of).  Nurse Aliza spent the last few weeks hiking the John Muir Trail and took him along. 

 

Aliza bracelet

Aliza bracelet2

Thanks for sporting your handsome Rudy bracelet, Aliza–Rudy and Lance make good company.  If anyone else happens to take Rudy on an adventure, we’d love to hear about it.

A perfect 4.0!!!

Lots to smile about; and nobody smiles like Rudy!

July 6

rudy smile

I think Rudy likes being home almost as much as we like having him here.  We enjoyed seeing him make it through his first week ever without a doctor’s appointment.  Given some of the med changes we’ve made over the past few weeks, we were curious as to what the report would be at his check-in with the cardiologist today.

We’ve gotten pretty good at reading chest Xrays, but echocardiograms are still very mysterious.  The process involves sitting quietly in the darkened room waiting as multi-colored blips flash across the screen accompanied by the sound of rhythmic pulses.  Lots of different measurements are taken and the print button is regularly hit when there seems to be a splotch worth capturing for posterity.  Only when it’s all over does the verdict come–and this time it was a good one.  Dr. Harake feels that there is nothing about Rudy’s heart function such that we need to schedule the Glenn.  Rudy can keep on enjoying life at home and continue eating and getting bigger (today he weighed in at 15 lbs 5 oz!).  His next appointment with the cardiologist is in early August so if his O2 sats remain in the 70s (today he came in at 77!) and there are no changes in his heart function between now and then, we have a real good chance of holding off on the Glenn until the fall. 

As far as the lab work, we were very curious as to his Potassium level as this needs to be closely watched and balanced for proper heart function.  Among the recent med changes, we discontinued Potassium supplements, so we were interested to see what his level was.  Turns out you not only want to see a 4.0 on your kid’s school report card; it’s also the number you want to see when your checking the potassium level in his blood.  And that’s right where it was–Rudy is doing great inside and out!