1/2 Her Life!

September 12, 2014 by

This has been a BIG “Back-to-School” week for us…we’ve had a “Back-to-School” night at a different school almost every night!  :)  Although the introductions to the kids’ teachers are always lightening-quick and information-packed, it’s great to get a glimpse into the kids’ day and meet the individuals who are investing in them so significantly…it’s an impressive list this year!!

We’ve also spent a good bit of time preparing for the Heart Walk and the Santa Barbara Rescue Mission’s annual fundraising event BOTH less than a month away!  Yikes!!!  This is always a full time of year with many significant celebrations but this week included one of the most special…the anniversary of the day our sweet Olivia was born!  :) Although her 12th birthday on Tuesday was full with school, soccer practice and a jr. high bible study, we managed to squeeze in some celebrating!!  This is a particularly significant bday for Olivia as it’s her last one before the teenage years and it also officially marks the start of a new era…she has now lived longer with Rudy IN her life than not. For half of her life, Olivia has journeyed with Rudy by her side and I can only imagine the ways her life has been impacted as a result.  I pray each day that the impact has been and will continue to be a positive one for all the big sibs.  It’s hard to believe that Olivia was just 6 when Rudy was born…WWWWHAT?!?!?!?!  She was so small…since “Rudy years” are a lot like dog years, it feels like a lifetime ago.  :)

We’re grateful for the thoughtful and compassionate young lady Olivia is growing up to be…there is much fun on the horizon for her as she settles into the big world of junior high and we celebrate all the joy and growth of the past 12 years while anticipating all the fun to come!!  Happy Birthday Big Girl!!

September 9, 2002

September 9, 2002

September 9, 2014

September 9, 2014

September 9, 2014

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In preparation for the upcoming Heart Walk, we had the opportunity to visit the Westmont baseball team on Monday and share Rudy’s story.    The Warriors form a team of their own every year and have become a special part of our Heart Walk experience!  Go Warriors!!!

Westmont Baseball Team 2014-15

Westmont Baseball Team 2014-15

Rudy has been working hard on his walking…Oma caught the Wonder Boy on video during her visit last month…at the rate he’s going, he’ll have no problem walking on his own at the start of the Heart Walk!  Go, Rudy, Go!!!

Rudy has also been working hard in therapy…motivated to try new things in PT like “mountain climbing” and is super proud of his “snack time” during OT…

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Rudy was quick to climb up the mountain to retrieve a "cool" hot wheels car!

Rudy was quick to climb up the mountain to retrieve a “cool” hot wheels car!

Rudy is lovin' him some sour cream and Doritos!

Rudy is lovin’ him some sour cream and Doritos!

Picture Day at school!  Stay tuned for the first official school picture!!!!  Ha Ha

Picture Day at school! Stay tuned for the first official school picture!!!! Ha Ha

Here are a couple more recent highlights…

Some fun with Max captured by Greg Lawler@

Some fun with Max captured by Greg Lawler

Wilson was invited to help a friend with her Girl Scout Gold Award project…she planned a "Senior Prom" at a local assisted living community!  Such a cute idea and Wison's dance card was full all night! :)

Wilson was invited to help a friend with her Girl Scout Gold Award project…she planned a “Senior Prom” at a local assisted living community! Such a cute idea and Wison’s dance card was full all night! :)

No matter what today holds for you, I pray there is something to savor and celebrate!  Bless you friends!!!

It’s That Time Again!!!

September 5, 2014 by

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We’re dusting off our walking shoes again and gearing up for this year’s Santa Barbara Heart Walk benefiting the American Heart Association on Saturday September 27th.  It’s coming up QUICK!!!  This will be our family’s 5th consecutive Heart Walk and we are excited to gather Team Rudy once again for this fun event to celebrate Rudy’s upcoming birthday and all that he has overcome these past SIX years!!!  (Can you believe he’s going to be 6?!?!)

This has become a very special tradition for our family and has grown to include many of you who have helped in our fundraising efforts and/or joined us at the event over the years.  We’re not ones to pay too much attention to numbers, normally, but were overwhelmed going into this year’s event realizing that we’re very close to reaching a cumulative fundraising total of $50,000.00 in the 5 walks we’ve done!!!  To date, we are just $4,000.00 away from reaching 50K!!!  WOW!

As in years past, the money Team Rudy raises will go to fund pediatric research and programs…particularly meaningful to us as Rudy’s future is dependent on new developments in pediatric cardiology. One of Rudy’s cardiologists at UCLA was recently appointed as director of research in the field of mechanical hearts in pediatrics (he has a much more sophisticated and official title than this but you get the idea). When I asked him back in June how long before a mechanical heart would be available for a kid like Rudy, he answered “20 years”. I sure would love to close that gap!  And research will do it!  :)

After last years Heart Walk, Rudy’s cath lab cardiologist (Dr. Dan) asked me about the Heart Walk and how it went. I told him how Team Rudy raised over $12,000 for the American Heart Assosciation in 2013 alone to which he responded “Oh yeah? I’ve gotten AHA grants in the past.”!!! What a wonderfully personal connection to make…so motivating in our efforts to raise awareness and funds that we pray will benefit Rudy.

Our hearts are truly grateful and we’re so excited…if you are compelled to do so, we invite you to join us by making a donation to “Team Rudy” and/or help us spread the word.  We have set a goal to raise $10,000 by September 27th which would put us a little over a grand total of $50,000 raised by Team Rudy since 2010. Wow! AMAZING!! You can click on the link HERE to donate (fast and easy) today or to learn more about the American Heart Association.  

As faithful Rudy’s Beat readers know,  Rudy continues to be in limbo regarding treatment to his heart but he has made amazing progress developmentally this year. He loves his new school, adores his big sibs and is rarely seen without a BIG smile. We count ourselves truly blessed and continue to navigate this journey one day at a time. Thank you for your investment and support along the way…we are forever grateful and we love you right back!!

Come join us for cupcakes on the 27th if you can…look for the “Team Rudy” tent on Cabrillo right across the street from the Fess Parker resort rotunda (at the crosswalk)…you can’t miss it!  :)  

Truly grateful for another blessing-filled year with this goof ball!

Truly grateful for another blessing-filled year with this goof ball!

A beautiful day in Santa Barbara last year...Heart Walk 2013!

A beautiful day in Santa Barbara last year…Heart Walk 2013!

Rudy walking the first block on his own!!!

Rudy walking the first block on his own!!!  Heart Walk 2013

Yay Rudy!!!!

Yay Rudy!!!!  Heart Walk 2013

 

Happy Back-to-School Day!

August 27, 2014 by

Today marked the start of the 2014-2015 school year for our kids.  We also said goodbye to Oma after her 2 week visit.  It was a big day (especially for Livy and Rudy who started at new schools) with some mixed emotions (sad to see Oma go, Livy’s nerves over starting Jr. High) but we’re ending the day on a happy note…Rolf, Olivia and Max ran off to the beach to surf as soon as Rolf got home from work…a big hurricane swell came in (!), Wilson is having a rare quiet evening at home and Rudy is quietly playing with a basket of cars after a 2 1/2 hour nap!!!  Ha Ha

The last few weeks have been so packed…right up to the end of the summer which made today feel like a crazy abrupt start to  structured life again. I may not be ready for summer to be over but I’m super excited for the kids…it’s going to be a great year!  

- Wilson is embracing his senior year with GREAT enthusiasm,

- Max is excited about playing hockey again this season and looking forward to a stellar sophomore year,

- Olivia has so many new experiences waiting to happen as a 7th grader – she’s going to LOVE the greater independence and responsibility that comes with being in Jr. High.

-  And, Rudy?  Well, he started at Mountainview Elementary today as a full-fledged Kindergartener in a split special ed/typical class.  It’s a good placement for him and we expect the fun trajectory of progress he has been on lately will take flight in this new educational environment.  

I anticipate there will be much to savor this school year!

Rudy had his routine appt with Dr. Harake (cardiologist) last week and his heart function looks as it did after the stent implantations in July…stable for Rudy so it looks like we’ll have a procedure-free fall.  Yay!  It would be great for him to have an uninterrupted season of school and therapy.  Big stuff!!  :)

‘Hoping your summer is wrapping up nicely.  Happy Back-to-School Day to you and yours!

Fun with Oma!

Fun with Oma!

Pic with the big sibs!!

Pic with the big sibs too!!

All smiles heading back to school!

All smiles heading back to school!

Car window "Love notes" to Wilson by Olivia and Rolf.

Car window “Love notes” to Wilson by Olivia and Rolf.

Olivia and Dahlia giving us the 7th grade thumbs up!!

Olivia and good friend Dahlia giving us the 7th grade thumbs up!!

 

Summer Family Road Trip 2014

August 13, 2014 by

My oh my!  Talk about taking advantage of EVERY minute of our little family summer vacation!  We were blessed to go to two very special weddings two weekends in a row…one in the Bay Area and one in Malibu…so we turned it into a family road trip and filled our week on the road with a college visit for Wilson, a day at Knotts Berry Farm, a stop at the US Swimming Natl Championships in Irvine, a Angels/Red Sox game in Anaheim and visits with friends we haven’t seen in a long time…we were only gone for a week but we packed in a ton of fun experiences.

Sadly, once we got on the road, Rudy came down with the same fever bug Olivia battled the week before so our itinerary changed a bit along the way as needed but, all in all, he was a real trooper and managed to have a little fun too.  His fever lingered between 102-104 degrees for 7 days!  Because it was a viral infection, there wasn’t any medication we could get him to help fight the bug so we had to wait it out and tried to keep him comfortable.  In a situation like this, our biggest concern is dehydration so keeping him well hydrated was our #1 priority.  Like with Olivia, once his fever broke, he bounced back quickly and is definitely back to his perky, goofy self…especially now that we’re home.

Because our road trip was filled with significant life celebrations and opportunities to reconnect with dear, old friends, I’ve come away from it all grateful for life, grateful for where we’ve come from, grateful for how God has directed our steps along the way and so grateful for the people with whom we’ve shared the journey.  This trip was a reminder of how rich we are in relationship and I don’t take it for granted one bit…here are some of the highlights:

We cleaned up pretty good for the first of two weddings we attended last week…Thank you Lynches for putting us up and for the fun visit!!!  I can't believe we didn't get a picture with you guys!!

We cleaned up pretty good for the first of two weddings we attended last week…Thank you Lynches for putting us up and for the fun visit!!! I can’t believe we didn’t get a picture with you guys!!

We were so honored to share in the DiRado's big day.  Maya is our god-daughter and her big sister, Sarah, married Chris O'Brien!  Rolf and I have officially entered the stage in life where our friends' kids are getting married and it's so special!!!  :)

We were so honored to share in the DiRado’s big day. Maya is our god-daughter and her big sister, Sarah, is the beautiful bride!  (pictured with foxy mama Marit)  Rolf and I have officially entered the stage in life where our friends’ kids are getting married and it’s so special…surreal but special!!! :)

The father of the bride was our best man…just  a couple of years ago, right?

Father of the bride Ruben was our best man…just a couple of years ago, right guys?

We always love a chance to see Maya!

We always love a chance to see Maya!

We enjoyed a visit to Crossroads Community Church in Palo Alto the following day where we got to see our former associate pastor and his family & the boys shared a song for the offertory…I wish I had taken a video…they rocked it! :)

We enjoyed a visit to Crossroads Community Church in Palo Alto the following day where we got to see our former associate pastor and his family & the boys shared a song for the offertory…I wish I had taken a video…they rocked it! :)

Even a stop at our favorite "The Creamery" in Palo Alto  couldn't help Rudy feel better! :(

Even a stop at our favorite “The Creamery” in Palo Alto didn’t make Rudy feel better! :(

A quick stop in San Francisco on our way to Sacramento was a welcomed pit stop!

A quick stop in San Francisco on our way to Sacramento was a welcomed pit stop!

I (Trish) enjoyed a mini-reunion with some of my dear Sac State friends and their families…it doesn't feel like any time has passed at all until you see the families!  ha ha

I  enjoyed a mini-reunion with some of my dear Sac State friends and their families…it didn’t feel like any time had passed at all until I looked around at all the kids! ha ha

Thanks, Gator, for making my kids' first visit to Sacramento super fun and memorable!

Thanks, Gator, for making my kids’ first visit to Sacramento super fun and memorable!

Next stop?  Knotts Berry Farm, of course!  Our family's favorite!!!

Next stop? Knotts Berry Farm, of course! Our family’s favorite!!!

Rudy got a special lucky horseshoe from the town blacksmith!  So sweet!

Rudy got a special lucky horseshoe from the town blacksmith! So sweet!…

…and he tried a few rides...

…and he tried a few rides…

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…but he mostly had fun watching the big sibs and friends Austin and Kylie run circles around him!

…but he mostly had fun watching the big sibs and friends Austin and Kylie run circles around him…when they weren’t eating funnel cakes!

Thank you Kenyons for a super fun time in Irvine!

Thank you Kenyons for a super fun time in Irvine!

While we were down south, we had the joy of watching Maya  compete at the National Championships…Maya advanced to the finals during the morning prelims...

While we were down south, we had the joy of watching Maya compete at the National Championships…Maya advanced to the finals during the morning prelims…

…a quick "hi" and a "hug" after the morning meet...

…a quick “hi” and a “hug” after the morning meet…

In between heats we made a stop at Max's favorite hockey complex…sponsored by the Ducks, of course!

In between the prelims and finals we made a stop at Max’s favorite hockey complex…sponsored by the Ducks, of course!…

…and squeezed in a sweet treat with Marit!

…and squeezed in a sweet treat with Marit!

Cheering for Maya in the finals!!!

Cheering for Maya in the finals!!!

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Maya placed a thrilling 2nd in the 400 IM…she's headed to Australia for the World Championship!!!

Maya placed a thrilling 2nd in the 400 IM (behind Olympian Elizabeth Beisel)…she’s headed to Australia for the Pan Pacific Championships!!!

Woo Hoo!  So thrilled for her!!!

Woo Hoo! Congratulations Maya!!!

Sweet Maya gave sweet Olivia her podium bear!!!

Sweet Maya gave sweet Olivia her podium bear!!!

Oh yeah, we got to see Lochte and Phelps compete  too.

Oh yeah, we got to see Lochte and Phelps compete too.

After Maya swam, we rushed off to Angels Stadium to see the Angels play against the Boston Red Sox (the tix were a bday gift for Wilson back in April).  He's a big Sox fan after visiting Boston last summer…and they won!!  Woo Hoo!!!

After Maya swam, we rushed off to Angels Stadium to see the Angels play against the Boston Red Sox (the tix were a bday gift for Wilson back in April). He’s a big Sox fan after visiting Boston last summer…they won!! Woo Hoo!!!

Last but not least, we cleaned up again for Amy and Andrea's wedding…everyone was all smiles and READY TO PARTY!!!

Last but not least, we cleaned up again for Amy and Andrea’s wedding…everyone was all smiles and READY TO PARTY!!!

We love these two and their extended families so much…it was a true blessing to share in their special day!

We love these two and their extended families so much…it was a true blessing to share in their special day!

Proud father of the bride Bob!

Proud father of the bride Bob!

Radiant mother of the bride Kathy!

Radiant mother of the bride Kathy!

Rudy braved the dance floor and even got a turn with the bride!!

Rudy braved the dance floor and even got a turn with the bride!!

It didn't take long for all four to fall fast asleep on our final push for Santa Barbara at 1am…the mark of a well executed vacation!

It didn’t take long for all four to fall fast asleep on our final push for Santa Barbara at 1am…the mark of a well executed vacation!

 

With that our summer is nearly over.  Wilson headed back to school on Monday for Marching Band Camp and we have some school shopping to do.  School orientations/paperwork are next week.  We’re finishing the summer on a high note, though, with a visit from Oma who arrives this evening!  It’s hard to believe another school year will soon start but it’ll be exciting as Livy and Rudy start at new schools and fall sports start up again.  This was a packed summer on many levels and not particularly restful but I’m grateful for what it all meant in the life of our family and praying for energy and God’s grace as we gear up for another year.

Our kids are pretty cute but every so often we take an okay picture ourselves.  :)

Our kids are pretty cute but every so often we take an okay picture ourselves. :)

Summer Highlights…So Far

July 31, 2014 by

‘So grateful Olivia’s fever finally broke and Wilson & Rolf made it home safely from Chicago early this morning.  Thank you for your prayers.  Even though the past couple of weeks have been difficult for me, there have been some fun moments too and I didn’t want them to be forgotten so here’s a little look as some sweet summer fun…

 

Wilson had some fun with Rudy on the trampoline a few weeks ago…it's a good thing I wasn't aware of how high Wilson was bouncing Rudy or he probably would have missed out on some BIG fun!!  Look at that smile!!...

Wilson had fun with Rudy on the trampoline a couple of weeks ago…it’s a good thing I wasn’t aware of how high Wilson was bouncing Rudy or I probably would have put a stop to it and Mr. R would have missed out on some BIG fun!! Look at that smile!!…

"Again, Wilson, again!"

“Again, Wilson, again!”

X Games….here he comes!

Big Air!

Rudy learning some new dance moves at Vacation Bible School!

Rudy learning some new dance moves at Vacation Bible School!

Fun with Maxo too!

Fun with Maxo too!

Artist in the house!  Our friend CeCe who painted this beautiful Rudy's Heart a couple of years ago visited with her family on their way through town! Summer joy!

Artist in the house! Our friend CeCe who painted this beautiful Rudy’s Heart a couple of years ago visited with her family on their way through town! Summer joy!

It's Fiesta weekend here in Santa Barbara…a favorite annual celebration.  Viva La Fiesta!!!

It’s Fiesta weekend here in Santa Barbara…a favorite annual celebration. Viva La Fiesta!!!

While Wilson and Rolf were in Chicago (on business and a college visit), they made a stop at two of my favorites - White Castle and my childhood home!  Yay!

While Wilson and Rolf were in Chicago (on business and a college visit), they made a stop at two of my favorites – White Castle and my childhood home! Yay!

We have just a little over 3 weeks left of summer…time enough to cram in a few more highlights!  Ha Ha :)  Stay tuned…

 

The Buoyant Hope of Heaven

July 28, 2014 by

I went to my friend’s service today…a beautiful celebration of her life.  Rolf and Wilson are out of town this week and Max stayed home with Olivia who has been battling a high fever and feeling awful since Thursday so Rudy and I went for our family.  I admit I struggled about going earlier today…I didn’t feel great leaving Olivia and I knew it would be hard to navigate the crowd with Rudy in tow but I’m so glad I went…it was beautiful.   As expected, the church was filled to its capacity.  I wasn’t sure if Rudy would be quiet so I sat in the baby/cry room with him…enclosed with a view of the sanctuary and audio piped in through a speaker.  As it turned out, Rudy was amazingly sensitive and sat quietly watching the service intently (especially the video montage of pictures of Kenon).  I, on the other hand, sat with tears streaming down my face the entire time (sobbing at times …grateful I was hidden in a soundproof room!)

 

For a handful of reasons my heart has been heavy the past couple of weeks…so heavy that it has felt like I’m barely keeping my head above water.  Even though I manage the day to day routine pretty well in general, it doesn’t take much for my anxiety and fatigue to surface turning into feelings of being overwhelmed.  It can be a quick downward spiral that’s hard for me to crawl out of.  So, there I was sitting in this little room today, trying to soak in all the beautiful things that were being shared, feeling overwhelmed and sad when Joni Eareckson Tada (who sent in a video tribute to Kenon) referred to “the buoyant hope of heaven”.  It was a quick reference in her thoughts on suffering but, boy, did my heavy heart perk up at the thought of the hope of heaven being a buoy on which to hold tight and rest…even if just for a minute…so I did!  During the two hour service I cried, embraced my fears, held tight to my hope in heaven and recommitted to the tasks at hand that have worn me down lately.  It was cathartic and precious…Kenon would be pleased.  :)

 

I’m praying now that Olivia recuperates quickly…we have two special weddings coming up this next week and I’m praying the virus Livy has been battling ends with her and doesn’t spread to the rest of us…we have much to celebrate with dear friends in the days to come and I sure wouldn’t want any of us to miss out.

 

Grateful for the blessings of today…

A Week of Extremes

July 17, 2014 by

It’s Vacation Bible School week at our church and that means all hands are on deck in our household as we all have our volunteer assignments!  Now that the big kids are older, it’s a real blast to get to partner together in this special ministry to kids in our community…it’s such a great week for our family but it’s also a bit sad for me as it falls, every year, on the anniversary of my dad’s death.  Dad died 4 years ago today of  brain cancer.  Tragically, I learned this morning that a local friend so dear to many of us, a loving wife and dedicated mother of 3 died last night after her 21 month battle with cancer…her fifth occurrence of cancer in the past 27 years.  Hers was an amazing journey of faith and love for people…she had a deep desire to know God and share what she knew to be true of God to others.  She experienced God in her day to day journey like no one else I’ve known.  I rejoice in her home going to Jesus and all that awaited her in heaven but my heart is heavy for her family and I’m going to miss her presence in our community…her comments of encouragement on Rudy’s Beat…her friendship.  This is a sad week.

me and dad circa 1968

me and dad circa 1968

 

 

 

 

 

Happy Birthday America!

July 5, 2014 by

We celebrated America’s 238th Birthday yesterday at the annual Santa Barbara Rescue Mission BBQ & Carnival.  The residents of the recovery program, staff and volunteers hosted a parking lot full of homeless guests who enjoyed a delicious bbq (I especially loved the pasta salad!), some fun ol’ fashioned carnival games and a bountiful raffle of helpful items. Rudy had run of the place in his walker and joyfully greeted the guests.  Luckily our friend Dale captured a bit of the fun…

Rudy arm wrestling with a guest…and winning!  Ha Ha  Go, Rudy, Go!

Rudy arm wrestling with a guest…and winning! Ha Ha Go, Rudy, Go!

High five

High five!

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Happy Day!

Happy Day

Rudy got tp'd later in the day at the fireworks show by our neighbor Jannele...

Rudy got tp’d later in the day at the fireworks show by our neighbor Jannele…

We avoid the firework crowds and watch from a parking lot across the street!  Yeah, we're kinda lame that way but all had fun nonetheless!

We avoid the firework crowds and watch from a parking lot across the street! Yeah, we’re kinda lame that way but all had fun nonetheless!

We hope you had a happy day too!  Happy July everyone!

Full Metal Jacket

July 2, 2014 by

Thanks for praying us through a loaded day yesterday. Given the haste with which this cath was scheduled–and some of the past experiences we’ve had of cath results being a kick to the gut–we were a bit apprehensive leading into things and probably even steeling ourselves for some tough news.

Our anxiety was heightened by the discussions during pre-op. The primary goal was to see if there were any things that could be done to lessen the strain on Rudy’s enlarged heart. Signs pointed to the coarctation in his aorta (fancy doctor-speak for a tight bend which restricted flow–like a stubborn kink in a gardenhose). The team has previously tried to correct this by inflating with a ballon, but the bend acted like a crease and it popped back. The way to fix it would be to insert a metal stent, which is common in adult patients, but Dr. Dan couldn’t think of a patient as young as Rudy in which he had ever done it. The main problem is “getting the equipment to the jobsite”. The large stent and catheter they would need to do the job would need to be threaded up the femoral artery from his leg and there was concern it just wouldn’t fit. Additionally (and admittedly a bit disheartening) is the fact that the left femoral artery is Rudy’s last un-occluded path to his heart.  Even the most skillful intervention creates scarring and an artery can only be used a limited number of times before it becomes impassable, leaving more complicated surgical cut-ins as the only option. So the team needed to weigh whether any intervention was worth that cost, but they wouldn’t really know for sure until they got in and assessed things.

Needless to say our heads were spinning more than usual as we headed downstairs–but at least it took away our appetites and kept us from stress eating our way through the waiting. Good company and a lot of drop-bys from docs and nurses helped to pass the time. We got a progress call from the lab nurse around 3 hours in that they had stented the Sano shunt (which had narrowed significantly) and were finishing up–no action on the aorta. Not bad news, but we kind of prepared ourselves for a “there was really nothing much we could do” conference.

Just a few minutes later we got paged again and Dr. Dan was on the phone rattling through the positives: heart function looks better than everyone feared (perhaps the reason we suspect they rushed us in), they were able to open up the Sano to its original size, and now they had just finished a consult with Rudy’s surgeon and did feel that they should attempt to stent the aorta.

The significance of the moment only hits me in hindsight, but almost unnoticeably things shifted into the quiet intensity that one can suddenly find themselves in in the cardiac world. Just as Dan told me that Brian Reemtsen (surgeon) was coming coming out to speak to us, Brian stepped around the corner. We had a brief three-way exchange with Dan in my ear and Brian in front of me to make sure I understood what was happening and that they were in agreement. Dan finished with, “we will stop at any point if we feel it isn’t safe, but do we have your permission to proceed?” Of course, I agreed but it was only later that it struck me that this was not a routine procedure.  Even with the global consents we had signed in pre-op, there was something about what they were attempting that they felt like they needed specific consent for.

Dr. Brian spent time with Trish and I expressing encouragement over Rudy’s condition and that, given the strength of the heart muscle, it was very worthwhile to attempt a step like this to reduce the strain.  While any future surgical course is still unclear, successfully addressing the coarctation would have to happen first. Brian certainly wasn’t promising anything specific, but there was a note of wonder that we might be talking about that someday.

We had a bit more to wait before Dr. Dan showed up to give his report and walk through the imagery. He was very upbeat and told us right away that the aortic stent could not have turned out better. The arc had narrowed to 9mm and they were able to insert and expand a stent to 16mm–the size of an adult aorta–which means there is no pressure gradient across it and the blood flows freely!

As the nurse told us over the phone they were also able to fully rehab the Sano shunt to its original 5mm diameter. It had shrunk down to 2.2mm at it’s smallest point, but they used multiple stents and balloons to get it back to its original diameter. As this is supposed to be the primary means Rudy’s heart has to oxygenate his blood, it’s very good to have it free and clear (and gives us chills to think how tiny it had become). Dr. Brian also commented on how amazing that little shunt has performed–he hasn’t seen one last so long and serve a patient as well as Rudy’s has. That could raise concern that we are well past borrowed time, but Dan said he’s now given the Sano and the aorta “full metal jackets” by lining them with stents which will keep them stable, open and clear for a long time.

Dr. Dan was very pleased, but also wanted to get back to Rudy as he was very concerned about the femoral artery. He said they would watch that very carefully overnight as a bleed there would be a major issue.  As you can already tell, the time in recovery went really smoothly and Rudy was peaceful and content to lie still like he was supposed to for the rest of the day and slept through the night.   Among the more significant developments was that his 02 sats were consistently in the high 80s (compared to the low to mid 70s where they’ve been of late.  Since this was his first post-trache cath, it was also the first time he was intubated, so he had a scratchy throat and barely spoke above a whisper–until the moment he saw his big sibs at home had him squealing with his trademark joy.

We’ve learned to navigate this journey and all its big uncertainties by looking for reasons to celebrate and embracing them.  That’s what this day meant for us.  The big questions didn’t get answered and the major issues didn’t get resolved–but who knows if and when they ever will.  For now, we’ll celebrate Rudy’s armor-plated arteries and the positive step they are.

 

Family FaceTime makes hospital stays more fun--but nothing's better than being together in person again!

Family FaceTime makes hospital stays more fun–but nothing’s better than being together in person again!

Headed Home

July 2, 2014 by

After an early morning echo exam, Rudy was cleared for discharge.

We’re headed home…with a stylish new hat!


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