Relishing the difference of this year

Trish just e-mailed these pictures from the La Patera “Hat and Mask” Parade and it brought back memories of all that was going on last year.  We weren’t around to see this:

Didn't think you could use "cute" and "skeleton" in the same sentence, did you?

Miss Grant did a brilliant job incorporating curriculum in the affair.  What’s Halloween without kids dressing up as “The Water Cycle”?

Max--because you can't have H20 without an enthusiastic "O"

All observed by one cheerful spectator and another perhaps more ambivalent.

It seems that part of the preparations for Halloween involves discussion of what one did and wore last year, which makes me quickly aware of contrasts.  Last year, we were just coming to grips with the fact that our quick little open heart surgery with the four weeks of recovery was turning into a more indefinite stay.  I remember Trish scrambling a bit from a distance to help Oma and Opa get the kids costume stuff together.  I remember the drastic shift one felt in leaving the quiet struggle of the ICU and finding oneself in the revelry of Westwood.  I remember thinking how this unexpected holiday in the hospital was a planning glitch (instead of the first of several we spent there). 

It made me wander back to an old post from last year and filled me with gratitude over the ground we’ve covered.   I’ve seen so many more moving examples of parents who summon the toughness I was seeing for the first time when I wrote that.  Rest assured, having missed last year, I’ll relish the fun that the simple ritual of dressing up and walking around the neighborhood brings for the kids, but many of our friends around the country whose celebrations will bear unique touches due to unexpected circumstances won’t be far from my heart.  I pray that there would be unexpected beauty and encouragement for these special kids and their families.  Owen, I’m so glad you should be home in time to trick or treat.  Josiah, Moriah, and Stellan–grace and peace (and maybe some contraband candy) to you and your parents.  Come home soon!

 

Godspeed, Little Man

 

Don’t weep at my grave,

For I am not there,

I’ve a date with a dragonfly

To dance in the air.

I’ll be singing in the sunshine,

Wild and free,

Playing tag with the wind,

While I’m waiting for thee.

I’m a bit short on adjectives to describe the week that’s coming to an end.  We said goodbye to Logan yesterday and our hearts are with Brett and Rayme and their family.  It was a beautiful day–clear with shining sun; people gathered together in a show of incredible love; images and stories of a wonderful little boy.  And it was the most horrible of days.

I marvel at the love Brett and Rayme have for Logan.  The courage that they displayed throughout his life was still evident yesterday as they walked resolutely through the ardous steps of laying him to rest and commemorating his life. 

So many words one wants to say, but none will bring the comfort one yearns to communicate.  So much gratitude for what we have, but such fear at how quickly it might be gone.  Who knew beauty and terror could be so closely linked?

I’m better at feeling yesterday than I am writing about it.  I suspect these pictures communicate it best.

A Date Carved into Memory

October 6th will never be “just another day” for us.  Even if Rudy’s birthday didn’t come just before to remind us, it will still be a long time before I don’t shudder a bit upon hearing this date.  Ever since last year.  Hard to believe it’s already been a year since this and this.  It’s amazing how reading through the posts can bring us right back to the day of Rudy’s surgery with such vividness.

As it turned out, it was quite easy to feel like we were back at UCLA again…because we were.  In some conversations we had last week regarding planning for the Glenn, the team thought it wise to have a consult with a pulmonologist.  Thanks to Rudy’s friends in high places, it all came together very quickly and they were able to fit us in today.

So there we were with our recollections furthered by being in the very place it all took place.  Up very early like we were a year ago.  The streets, sidewalks and hallways so familiar we didn’t even need to look for signs and room numbers.  Same parking lot.  Same patio of uneasy people.

I recall how scared I was.  But it was quickly replaced by reminders of how far we’ve come.  It was really hard to stay down when one of the first people we came across was our hero:

HAIL, CESAR!!!

That’s right folks…THE ONE AND ONLY CESAR!!!!!  Providentially, the first person we saw when we walked into the building was Enrique (Cesar’s Dad) as they were there for follow-ups.  As we each had our own slate of appointments we didn’t have long to visit with Cesar, Enrique and Maria, but it was such a blessing to see them.  Glad Rudy has tough guys like him to look up to!

On the medical side, we were very encouraged by our appointment with Dr. Pornchai Tirakitsoontorn.  We don’t include every doctor’s name, but when you get one with a name as cool as Pornchai Tirakitsoontorn, you’ll risk melting down your spell checker and throw it around a bit.  Dr. Rick insisted that Rudy get the best and, while I feel sorry for you if you have to call his name when you’ve fallen into a well, if you need a pulmonologist, Pornchai Tirakitsoontorn (the Clinical Director of Pediatric Pulmonology at UCLA) is your guy.  Pornchai Tirakitsoontorn.  It sounds just like it’s spelled, dummy.  I know–y0u’re wondering how many times I’m going to type “Pornchai Tirakitsoontorn”.  It took me awhile to master it, but now that I do it kind of rolls off the keys…

OK, so I am a bit giddy over the time with Dr. T.  We’ve found that consultations with new specialists can be unsettling, but this one wasn’t.  Rudy’s lungs have been a point of concern (they couldn’t extubate him and had to resort to the trach), and pulmonary function is a big issue when it comes to the Glenn, so we were eager to have a thorough analysis.  Dr. T came in clearly knowledgeable of Rudy’s history and then spent over an hour with us going over details, conducting his own exam and then sending us for a chest Xray.  Bottom line, he feels that Rudy is doing great.  The lungs are strong and clear–much better than he thought they would be from going over Rudy’s history.  The chest Xray today looks much better than the ones from his hospitalization 5 months ago.  Dr. T said that, if he didn’t know the Glenn was coming up, his recommendation would be to move toward eliminating the trach!

This is such great news.  All along we’ve been operating under the hopeful assumption that the trach was an intermediate step to get Rudy breathing on his own and not a permanent need.  We feared coming out of that office with some tough news, but the assessment was that Rudy has gotten bigger and stronger and is breathing better.  No timelines for how it will all come about yet (the Glenn comes first); but we’re very happy.

After leaving Dr. Pornchai Tirakitsoontorn (sorry, one last time), we finally got to make the walk up to the main hospital and to our former home on the 5th floor.  We were visitors not patients.  So many spots brought back feelings of weariness and fatigue.  I don’t think we’ve seen the last of that, but today it was fun to confuse Roger as we buzzed our way into the unit.  So great to see everyone there and enjoy such a warm welcome.  Again, I’m amazed by the ability these remarkable people have to be warm and enthusiastic over our return and focused on the pitched battles going on in those little bodies in all those rooms.  I’m so glad we got to see so many of you all in the midst of the important things you do.  We didn’t get many pictures, but here’s a couple:

Sara and Roger

Anita and Dr. Robert

It’s hard to put into words what you feel when you’re with the people who saved your child’s life, but it was rich.  Thanks everyone.  It was great to see you.  Thinking back on our day, I can’t say October 6th hasn’t passed without any tears shed but this time they weren’t those of fear and uncertainty, but gratitude and awe over what’s been overcome.

Basking in the afterglow…

The running posts yesterday tell the story very well.  It was a full day with much to celebrate.  We’re so grateful for all of you in SB who celebrated with us and for those who sent us pictures from around the globe.  How fun!  Please forgive us as we’ll be tied up through Saturday, but will look forward to posting all the pics and sending on the favors.  There’s still time to send yours!

It’s overwhelming to consider all that we’ve been through in a year.  Just this morning, I spent some time reflecting on the journey and how it all started.  They told us it would be tough, but we never thought we’d have to fight so long and hard.  I don’t think I’ll ever be able to recognize Rudy’s condition as a “good thing”, but there is still a place to be grateful for what this has brought about our family.

The next leg of the journey feels like it might be on us before we know it.  We’ve had some communication with UCLA and next week come the appointments which we were able to put off until after this milestone.  But details on that when the time comes…for now I think we’ll extend the celebrations into the weekend.

Thanks for rejoicing with us!

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

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:

 

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

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…

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

Then things took a turn for the worse.

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.

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.

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..."

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!

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!

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!

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.

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:

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

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

Then again, they do have some destructive behaviors…

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

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