Archive for September, 2009

Where Are We Now?

September 30, 2009

     It is the eve before Rudy’s 1st birthday and the memories of this time last year are both a big blur and so vivid.  It feels like de ja vu as, like last year, we are busily preparing for the Rescue Mission’s annual fundraiser that is happening this Saturday.  Rudy came just 3 days before the Bayou last year and I think we must have sent a few folks into a bit of a panic when news spread that we were at UCLA but it all worked out wonderfully…Rolf and I were able to make it back for the event after Rudy was safely settled in the CTICU and before his heart surgery the following Monday and I remember it being such an encouragement to be in the company of so many dear friends in the midst of our whirlwind start to our journey with Rudy. 

     Here we are a year later and I can’t help but remember the times in the CTICU when we were naive but also intuitive enough to know that the concerned look on the docs’ faces wasn’t a good sign…or the call I got from Dr. Marie when she told me they had to do CPR on Rudy and I RAN back to the hospital with tears streaming down my face terrified of what I’d find when I got there…or the week in December after several surgical procedures in a row when Rudy’s hair fell out and he looked like he had had ENOUGH!  So many memories both hard and wonderful and tomorrow we add to the wonderful memories.

     I’m not sure what I thought life would look like at this point but I do feel like we’re doing better than one would expect.  I’ve been asked lately how we’re doing and I’d have to say we’re doing well.  We are managing the essentials of home and family…our lawn may be dead, but our sheets are clean…our photos aren’t making it into the albums but homework is getting done and turned in on time.  I think the most noticeable longterm side effect is our lack of energy…life feels pretty balanced when we are engaged in the normal routine but when something changes, is added to it or we are faced with a minor annoyance, Rolf and I notice the lack of reserve.  This isn’t to say we don’t have our bad days or aren’t preoccupied by the stress of work, money, Rudy’s upcoming surgery, kid concerns, etc. but the big picture is blessed.

     When we brought Rudy home from the hospital back in May, I remember hoping he’d be sitting up by his first birthday and, I suppose, we could obsess over all the things he’s not doing yet but the reality is he HAS come a long way.  Four months ago, he was still looking predominently to his left unable to reach out and grab for objects.  Now he is able to track with his eyes moving his head from side to side, he can grab his little paci toy and get it to his mouth, he is starting to roll to his side, he is kicking his legs in excitement and, of course, he is smiling more and more…that reasurring smile that absolutely brightens the room.  He is even learning how to play “peek-a-boo” as demonstrated in the video below:

     Bottom line:  Our one-year-old is limited in ways but knows only LOVE, LOVE, LOVE and gives so much JOY, JOY, JOY.  Rudy’s reality may not be perfect but it is rich.  How grateful we are…

Break Out the Birthday Decorations!

September 24, 2009
Gettin' ready to decorate...

Gettin' ready to decorate...

Wow, it truly is hard to believe that one week from today Rudy will celebrate his 1st birthday.  All those months in the hospital I didn’t allow myself to look very far into the future and since we’ve been home, life has been so full and active I haven’t had much time to think about it…but here we are – a year later and getting ready to celebrate a major milestone.  We may look a little tattered and worn but our family is certainly richer for the experiences of the last year and we are deeply blessed by the joy and laughter Rudy brings to the scene.

Our “Rudy’s Beat” community of family and friends has been a big part of the blessing of this past year through your prayers and encouragement.  Because you are a significant player in Rudy’s journey so far,  we wanted to extend an invitation to you to take part in a “worldwide” cyber-celebration.  We invite you to wear Rudy blue (aqua), do something special  or creative next Thursday, October 1st in honor of Rudy’s birthday and email us a pic of you celebrating.   As if that isn’t fun enough, all cyber-guests will recieve a party favor so be sure to email us your mailing address too!  Ha Ha

We have a tradition in our family of sending “cousin cash” to our nieces and nephews each year on their birthday…a small gift that the birthday boy or girl can pool together and get something they really want.  For those who feel so inclined, in lieu of sending Rudy a gift, we’d like to invite you to send a small “cousin cash” donation to www.kissesfromkatie.org in his honor.  Katie Manning, along with her parents, was and continues to be a source of inspiration to us and we would be blessed to see the very practical help her parents are providing to ICU kids and their families through their organization supported. 

Locally, we’ve decided to keep things LOW KEY but if you happen to be in the Santa Barbara area, please join us at the McDonald’s on Fairview Ave. (ocean side off the 101 – and not just ANY McDonald’s, this is the birthplace of the Egg McMuffin!  So, for those of you who don’t do fast food – Kelly- it’s kind of like going to a museum!) for a hot fudge sundae…we’ll be there Thursday evening from 6:30-8:00pm on the patio!  Ha Ha 

Okay, gang, get creative and LET’S PARTY!!!!

PARTY!!!

PARTY!!!

It’s a bird! It’s a plane! It’s….DeSAT Boy!!!

September 23, 2009

I think there’s consensus on the fact that Rudy is a superhero, but I’m not sure everyone grasps the full extent of his superpowers.  Lately, I’ve been studying one carefully as it boggles the mind…he seems impervious to unbelieveable dips in his oxygen sats.

For those of you who aren’t heart parents or pulse oximetry geeks, normal oxygen saturation levels in humans are 92-100%.  If you dip below 90% you get put on continuous oxygen.  When normal humans get below 80%, function can become drastically impaired.  Not much farther below that and they start to turn blue.

As an HLHS parent, you’re told that your child will have sats in the 70s and 80s prior to the Glenn.  Rudy needs continuous oxygen to stay at that level, but the docs have told us that there’s no need to get neurotic if tanks run out, the power goes out and the concentrator doesn’t run (like it did last week), or we need to give him his bath.  It’s not devastating for him to drop below that level for a period of time.  We check sats regularly just to keep an eye on things and this is where Rudy’s superpower becomes evident.  This week, I brought him in from the car and decided to check his sats while the concentrator warmed up.  Here’s what I observed:

 

CaptainD-Sat2CaptainD-Sat3CaptainD-Sat4CaptainD-Sat1

Good heart rate of 125.  O2 sats of 35!!!  Pink as can be.  Smiling and laughing away.  How does DeSat Boy do it?  (Yes, it’s reading right).  I’m expecting calls shortly from NASA and an Everest expedition or two as I’m sure they’ll be curious as to why they all need supplemental oxygen to function (pansies) while Rudy keeps right on giggling.

Fly on, DeSAT Boy!

Walking, rejoicing and hurting with others

September 21, 2009

At several points during Rudy’s hospitalization, I wrote of the challenge it was to focus on work and life here in Santa Barbara when Rudy was having a tumultuous episode down in the ICU. Even though we’ve had a long stretch this summer with Rudy safely at home, I have still had to battle episodes of distraction. I never know when they’ll hit…just that they do with weekly if not daily regularity.

Sometimes it centers on Rudy’s condition and the unknown battles that loom ahead. This came to the forefront of my mind at “Back-to-School” nights this week as we let teachers know about our family’s situation and the disruption the kids will have to face in the coming months when Rudy has to go back to UCLA. We don’t know exactly when; only that it will have to happen. It has to. Part of me says it can’t be as challenging as it was last time—the Glenn is a much less complex surgery than the Norwood—but it’s still heart surgery on an infant whose history contains a myriad of complications. For some reason, the prospect of getting swept along in ignorance like we did last time seems preferable to being informed a bit more about all that has to happen (and so many things that could).

I’m aware of the things that could happen not only from our experience, but from that of the community of parents we’ve discovered around the country who are dealing with HLHS and other congenital heart issues. And lately that’s what drives me to distraction. Reading of their battles stirs recollection of shared experiences I wish none of us would have to claim. My internet rounds each morning to check on Rudy’s buddies can leave me awed and agonized all at the same time. I see parents who display remarkable grace and courage in the face of terror. I often come away impressed by their fortitude in carrying on. I always come away impressed by the terror. There’s no limit to what this will ask of a parent. There’s no assurance that fighting with all one’s might will spare one the ultimate cost. We sojourn in the awful place where babies die; a place we’d all rather rush through only when absolutely necessary—if we can’t avoid it altogether. So somehow this community forms with the others who find themselves there.

And I hurt with them. I get carried into distraction when their battles get intense much in the same way I did when Rudy would be fighting through his episodes. Some days are marked by frequent checks for blog updates and emotions that surprise me in their intensity. Lately it’s been reading of precious Moriah and her parents’ anguish that ruins me for the day. A couple of weeks ago, I walked around in a stupor because of what Mason’s parents must have been feeling as the doctors told them there are no further interventions possible. Most readers know of the tears we’ve shed over Katie and lately they’ve been joined by those for Ethan the Brave, Bridger and Cali whose battles ended the way no one wanted to see. It shouldn’t have to be this hard to be a parent, much less a baby.

Although this is heavier stuff than I would ever have envisioned having to live with for such an extended period of time, one learns to live without a somber pall cast over all of life. These friends (and others, like Owen) have taught us that even within the darkest of circumstances, there is space for beauty, joy and laughter. Lose sight of this and you risk losing your sanity—if not your humanity. I’m learning not to second-guess my happiness over the progress we’ve reported on Rudy over the last few months. It’s not fabricated or ignorant bliss. From watching others, I’ve learned that you navigate this journey best by being able to feel contradicting emotions at the same time. I am truly joyful over Rudy and his progress and I’m gravely concerned by the seriousness of his condition.

I see with fresh eyes that some of the scriptures we deem “upbeat” (Rejoice in the Lord always—again, I say, rejoice! Phil 4:4) and tend to set to happy melodies, don’t actually emerge out of carefree episodes; but extremely trying ones (Paul sat unjustly in prison when he wrote this). The rejoicing does not come from the absence of pressing concerns but emerges as a resolve in the midst of them. I suppose there will be episodes where we are better at this than not.

Some may have noticed that our posts aren’t as introspective since Rudy’s out of the hospital. Life certainly has more activity and less stretches to ruminate than we had in the ICU, but the thoughts and feelings are still “there” and can take over at a moments notice as we walk with other families.

Reason to breathe easier…

September 16, 2009

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…

September 10, 2009

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…

Too much living for words…

September 10, 2009

Since school started, the pace at home has picked up and time is FLYING by.  There are so many new experiences for Rudy about which we’ve wanted to post but they are happening so fast and a big snowball is starting to form…rather than go into lengthy descriptions of all the fun, I’ll let the following pics speak for themselves. 

Visit from Aunt Andi Aug. 28-30

Visit from Aunt Andi Aug. 28-30

Rudy "went" all the way to Africa with our good friend Mark.

Rudy "went" all the way to Africa with our good friend Mark.

Rudy's first football game...watching big bro Max!  I couldn't zoom in enough to catch Max in action but he did well.  Go Chargers!

Rudy's first football game...watching big bro Max! I couldn't zoom in enough to catch Max in action but he did well. Go Chargers!

Labor Day:  The big kids decided to introduce Rudy to the Thomas train set and, as you can see, built their track around him.  I think Rudy liked being included! :-)

Labor Day: The big kids decided to introduce Rudy to the Thomas train set and, as you can see, built their track around him. I think Rudy liked being included! 🙂

Joy!

Joy!

Our new family favorite!!!  Olivia staged this treasure right before she took a dip in the pool...Rudy watched from poolside in awe.  Once the trach is out, I bet Rudy will learn how to swim before he learns how to walk!!!  CLASSIC!

Our new family favorite!!! Olivia staged this treasure right before she took a dip in the pool...Rudy watched from poolside in awe. Once the trach is out, I bet Rudy will learn how to swim before he learns how to walk!!! CLASSIC!

Let The Party Planning Begin!

September 8, 2009

When Rudy last saw the Docs at UCLA in early June, the hope was to push the Glenn back to late September or early October putting us back in the hospital around Rudy’s 1st birthday.  Well, after today’s appointment with Rudy’s SB cardiologist, it looks like we get to hold off and push it back even more which means we can party at home on October 1st!!!  Yippy!!! 

As much as I would love to have a general timeframe for the next heart surgery so I can begin planning for the family’s needs during Rudy’s next hospital stay, the fact that we get to wait another month to answer this question is a good thing for Rudy.  Strong lung function is important to the success of the Glenn procedure where the superior vena cava is ligated (or cut) from the heart and connected directly to the pulmonary artery.  The “blue” blood then goes directly to the lungs instead of through the heart.  Given Rudy’s chronic lung disease issues, the more time his lungs have to grow and strengthen, the better!   In layman’s terms, it is risky right now to do the Glenn procedure on Rudy but there will come a time in the not so distant future when the risk will lie in NOT doing the procedure.  We’ll know this shift has occured when Rudy’s oxygen sats lower and remain low even when he is on oxygen.  Our next scheduled appointment with Dr. Harake (SB Cardiologist) is October 9th…if things remain the same for Rudy, we’ll plan another 4-week appointment and so on until his condition changes and surgery is finally on the table (no pun intended). 

The “not knowing when” is driving me crazy but it is clear that the best approach to managing all the intricate unknowns of the next few months is to not attempt to manage it at all and take it ONE DAY AT A TIME…why do I have to CONSTANTLY remind myself to do this?  Correction…I’M driving me crazy!!!!  🙂

Most importantly, at 17 pounds and 27 inches, Rudy is doing well today and we pray for his lungs to heal and his body to continue to grow preparing a healthy foundation on which to take the next step in this HLHS journey.  Thank you for your continued prayers as we all wait together!

Two Super Stars

September 4, 2009

I just had to post the following link to a radio interview my dad did this week.   If you have a minute, it’s a great interview for a wonderful cause.  Dad is participating in the Head for the Cure 5K Race/Walk (www.headforthecure.org) on September 13th in Lawrence, KS in support of brain cancer research.  Although he will be starting a new chemotherapy regimen this month, his doctor has given him the go-ahead to participate with a few precautions in place.  Once again we cheer, “Run, Grandpa, Run”!!!

To hear the interview, click here, and then click the “Dick Wilson KLWN Radio” Bar to start!

Since we’re on the subject of links…here’s one more for you.  Rudy made Greg Lawler’s photo blog again (not like we’re counting or anything!)…boy, do I wish I had his gift for capturing precious moments.  Click Here!

Happy 11 Months!

September 1, 2009

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.