Rolf and I enjoyed a rare gift of getting away for 4 nights this past week in Vegas for our 20th anniversary.  We’ve NEVER been very good at carving out this kind of time together and even less so since Rudy was born but Rolf was inspired by a killer deal on Groupon a few months ago and went for it to celebrate this milestone!  We laughed throughout our Vegas adventure as it’s clear we’re not really “Vegas” people…we’re not big drinkers or big gamblers and it felt like we had huge neon “nerd” arrows hanging over our heads the whole time…BUT we did what we do best and found fun!  We ate our fill, took in a few GREAT shows and won a whopping $30 jackpot at the quarter slots!!!  Most of all we enjoyed days where we got up with no agenda and let the day take us where it wanted us to go…no thinking through if a venue was wheelchair accessible, no making sure we had the necessary enteral supplies, oxygen tanks or meds, etc.  Of course, we thought of the kids non-stop and lamented the fact they weren’t with us every time we saw something we knew they would flip out over (David Copperfield or Cirque du Soliel) but they had a fun visit with Oma at home and Rudy was well taken care of between Oma (a retired RN) and his nurses.

And now, here it is Thanksgiving week (how is this possible?)!!  We’ll take time to write a proper Thanksgiving post later this week but to get a jump start on the theme of gratitude, here’s a little peek at an article by Becky Still that was published in the Fuller Alumni News this week.  Becky interviewed Rolf a couple of weeks ago and we’re so grateful for her effort and the thoughtfully told article that resulted.  We are honored and blessed by her interest in our journey… Alumni in Action Article

We are honored and blessed by your interest in our journey too…thank you for being a BIG part of this journey and for the prayers that have carried us from day one!

Joyful Thanksgiving preparations everyone…:)

Okay, we’ve been boring people on Facebook ALL DAY with campy wedding status updates in celebration of our 20th anniversary so I won’t post much on Rudy’s Beat tonight but we can’t let the day pass without mentioning the special celebration today holds for me and Rolf.  It has been a fun day of reminiscing and reflection over all that has transpired in the last two decades.  We certainly couldn’t have imagined all the “points of interest” in this journey of ours that have led us to where we are today…settled in Santa Barbara with our precious family of four – but there is little I would change if we had it to do all over again.   Each bend, each twist, each adjustment we have faced in our life together has drawn us closer to each other and more dependent on God whose presence has been our hope and our strength.  Here’s hoping for 20 more!

The icing on top of the wedding cake came in the form of a confirmation letter from “Make-a-Wish” yesterday granting Rudy a special visit to “Give Kids The World”!!!!  It’s official…we’re headed to Florida in January!  Yay!!!!  How very humbled and grateful we are…

 

 

Halloween has always been a fun time in our household but because it was our first holiday in the hospital with Rudy, the significance of celebrating Halloween together under one roof is not lost on me…the memories of that season are still so vivid!

We are so grateful for how far we’ve all come since then…today’s celebration included the traditional La Patera Hat & Mask Parade and, of course, trick or treating!  Happy Halloween dear friends…and so starts the fabulous season of holidays!!!  Yippy!

 

Much to my delight, it didn’t take much coaxing to get Rolf and the big boys to go to the pumpkin patch with me, Olivia and Rudy Thursday afternoon!  Our local Lane Farms pumpkin patch has got to be the sweetest patch around…complete with a corn maze, hay ride and pot-belly pig!  A trip to Lane Farms is a fun fall tradition and it pleased this mama’s heart to have the whole family join in the fun…

 

 

 

 

 

 

So we saw Dr. Harake today and Rudy’s heart looks about the same as last month…the leakage is still mild to moderate and the enlargement of the right atrium and ventricle remains the same.  The plan for now is to sit tight, keep Rudy healthy this winter, pray his heart remains strong (essentially what we have been doing for the past two years)…and revisit the decision to pursue the Glenn in a year or so.  Dr. Harake didn’t even mention a timeline for his next heart cath which I think is a good thing…it would be real nice to give him a procedure-free season for a bit, if we can…and continue to embrace each day as it comes.    Happy Harvest dear ones!

The Wonder Boy really hasn’t skipped a beat (no pun intended) since losing the trach last week…his stoma is considerably smaller and healing nicely so far.  We keep it covered with a bandaid and he doesn’t mess with it at all.  It’s amazing to watch him move more freely and I see (or should I say, “hear”) noticeable improvement in his ability to articulate consonants.  He’s a little chatter box!

Laying low at home for a few days served Rudy well, but it didn’t really end up being a quiet week for the rest of us.  A string of unexpected things kept us on our toes and kept me OUT of my shop – not any jewelry making going on this week!!!  I’m hoping I can carve out that holiday prep time next week – if I were superstitious, I’d be knocking on wood right about now!

Speaking of the unexpected, we’ve had a couple of unexpected good-byes this week…Rudy’s endocrinologist, Dr. Lifshitz, announced his retirement and it just so happened that we had our routine appointment scheduled with him already…so, Wednesday’s appointment turned out to be our last with him.  Thankfully, we are blessed with 2 other pediatric endocrinologists in town so I’m certain Rudy will be in good hands but it’s hard to say goodbye to a key member of “Team Rudy”.  Dr. Lifshitz, who manages Rudy’s hyperthyroidism, has been one of our more vocal cheerleaders…always affirming and always good for a reassuring pat on the back.  I will miss him and his office assistant Kim!

We also got word on Monday that Rudy’s school nurse, Evelyn, was reassigned to another school and so Rudy will be getting a new nurse!  We’ve been blessed with one great nurse after another so I expect Rudy’s new nurse will be no different but it is still hard to say goodbye to “a good fit”.  Evelyn was wonderful with Rudy and we’ll miss her sweet, tender care.  One of the interesting dynamics to my life with Rudy is that I feel like the members of “Team Rudy” (like his nurses, therapists, doctors and the office managers/staff of all the doctors offices we frequent each month) are my primary social community since I see them more than anyone else so when someone leaves, I really feel it much more than I should.  (Ok, that sounds a bit pathetic but it’s true!)

 

 

 

 

 

 

We have an appointment with Dr. Harake tomorrow (Friday) afternoon and Rudy & I head back down to UCLA on Monday for an appointment with Dr. Woo (pulmonologist).  I don’t imagine there will be much to report but it will be good to check in with both docs post-decannulation.    Thank you for praying for Rudy’s adjustment…we couldn’t be more proud of him and the big sibs…they’ve all weathered the past couple of weeks well.  Sleep tight dear friends!

We were happy to get home safely from LA yesterday just in time to love on the big kids and watch “Modern Family” with the boys before heading to bed but we’re definitely feeling the effects of the adrenaline rush of the past three days today!  Rolf and I woke up groggy and unfocused – unmotivated to jump back into the fast pace of life at home and work – Post Adrenaline Rush Let Down, I guess.

Rudy continues to do well…he, too, is a little groggy today but we both enjoyed a quick trip to Livy’s school during morning recess at Livy’s request. 🙂  Now we’re home again and getting things picked up and put away…a little laundry, alotta paperwork and some reorganizing of medical supplies are on today’s agenda.

Dr. Shapiro warned us that some of her pediatric patients have difficult adjustments after decannulation – almost like losing a binky.  Thankfully, Rudy seems pretty content without the trach and giggles when Daddy tickles his bare neck with his beard but he is NOT very content to keep his nasal cannula on.  I thought he had already made that adjustment but it must feel different to him now so it’s time to bust out the tape again.

So, we’ll rest up, catch up and get back into the swing of things over the next couple of days.  With decannulation behind us, it’s time for me to spend some serious time in the shop building up my “Silver By Trish” inventory for the holidays!  HOLIDAYS?!  YIKES!!

Love you dear friends…grateful for your prayers this week!

Here are a few more pics from our PICU visit…

 

 

 

 

 

 

 

It sure was a different drive down to UCLA this morning…Rolf and I both commented on how strange it felt to be heading to UCLA without a huge weight resting on our shoulders…it was all going to be pretty straight forward…bronchoscopy, removal of scar tissue if needed, decannulation and observation – DONE.  No heavy consult with docs afterwards – just “get in”, “get it done” and “Wha-La! Finished”.  And, thankfully, that’s about how it all transpired today.  Dr. Shapiro said Rudy did well in the OR…he tolerated the anesthesia well and only fussed coming out of it as we would expect.  She didn’t need to remove any scar tissue and the small granuloma present near Rudy’s stoma will heal over time, most likely, without intervention so it was a pretty effortless procedure today!  We are so thankful.

 

 

 

Within 2 minutes of walking into the hospital lobby on our way to admit this morning, we ran into familiar faces…Dr. Shannon (who is one of many cardiologists at UCLA who weigh in on Rudy’s case during group conferences) and Dr. Reemsten (Rudy’s surgeon) both had really encouraging things to say about Rudy’s status and how great he looked.  (Always fun to hear!)   We ran into Dr. Kelly (CTICU Attending Doc) and Dr. Feinberg (CEO of the UCLA Health System) in the cafeteria while Rudy was in the OR and they, too, couldn’t have been more complimentary of Rudy’s progress.  (LOVE IT!)  Rudy had a relatively short stop in recovery – a bit fussy until Mom and Dad arrived – and was then transported up to the PICU.  Dr. Rick just happened to be waiting for us and he got an update on the big sibs from us while Rudy’s nurse and the attending PICU fellow got Rudy settled comfortably.  For all you long-time Rudy’s Beat readers, yes, that’s RT Oscar in the pic!!!  He was part of the welcome wagon too!!!  It was a fun reunion…

 

Remarkably, Rudy really hasn’t slept at all this afternoon so hopefully that means he’ll sleep soundly tonight.  Dr. Shapiro has ordered TWO nights of observation instead of one so as it stands now, Rudy will be discharged and we’ll head home on Thursday.   So far, Rudy is handling not having a trach great!  He definitely notices something is missing and is trying to figure it out.  Thanks for all the wonderful blog comments and texts today….so grateful for all the prayer and encouraging words!  Today marks the end of something pretty significant and the start of a fun, new chapter in Rudy’s development, we pray!

 

My, oh, my!!  Yesterday was so full and so special at the Santa Barbara Heart Walk..it’s hard to absorb it all!  We were blessed with another gorgeous day and a picturesque spot right along the beach to set up our Team Rudy tent.  We had over 50 friends join us for the walk which was evident to all who saw the sea of Rudy blue balloons scattered throughout the route.  We enjoyed sharing the day with friends from church and the SBRM, eight of Rudy’s little buddies, the Westmont College baseball team, nurses, dear friends from L.A., a handful of Livy’s Girl Scout sisters, school friends of Max’s, Wilson and the DPHS drum line, the DPHS cheerleaders and about 600 other Heart Walk participants!  🙂  Team Rudy was recognized as the Top Fundraising Team with a grand total of $8385.00…we are so proud of our team’s remarkable effort.

One of the many special highlights of the day was meeting a beautiful young couple – Jeni and Nick Busta.  At the age of 25, Jeni is one of the oldest HLHS survivors and I was introduced to her story shortly after Rudy’s diagnosis over 4 years ago.  I had heard of Jeni and her husband Nick a few times since Rudy was born but hadn’t had the opportunity to meet them until yesterday.  They just happened to be visiting Santa Barbara for the day and came down to the Heart Walk event to cheer on a friend who was participating.  Always on the lookout for CHD families, Jeni and Nick wandered over to the Team Rudy tent and I recognized Jeni the minute I saw her!!  I can’t tell you what an encouragement it was for me to finally meet her – a true inspiration to countless kids and their families in the heart community.  They even ended up walking part of the route with us and staying for Rudy’s birthday celebration!  We will definitely be following up with the Bustas for a longer visit – I have soooooo many questions for them both.

Rudy tolerated the day well and even took a few steps of his own at the start of the walk!  All in all it was a special day for our family and, we pray, a key effort in the battle against heart disease and congenital heart defects.  Thank you dear friends both near and far for your outstanding show of support.  Here’s a glimpse of our day.  Go, Rudy, Go!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Happy 4th Birthday Eve Rudy!