Rudy’s Summer Break!

July 26, 2016 by

Rudy’s summer school session ended last week so he is now officially on summer break!  Woo Hoo!!!  He recently discovered the joy of Mario Kart on Wii and has become a video game junkie the last couple of days…aaaah summer!  Rudy has actually REALLY enjoyed being home with nothing to do but play video games and swim.  We pushed him pretty hard the week after the cath as he had his regular school/therapy schedule AND Vacation Bible School at our church each evening AND we decided to cap off the week with a day at Disneyland to visit cousin Josh!  Although Rudy wasn’t a particularly willing participant in any of it, he ended up going with the flow with a little encouragement and we made some fun memories nonetheless…

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Rudy on “Sea Creature” night at VBS!

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Doin’ Dland with cousin Josh!!! Rudy wasn’t too keen on the crowds but the rest of us had a blast…

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We did, however, get him to smile with Mater!

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Our new favorite attraction is the Animation Academy in California Adventure…so. much. fun.

We made it home from Disneyland in time (with TWO hours to spare) to see Rolf off to the airport for a business trip to Chicago and then we had a day to get ready for Wilson’s return from Ft. Knox.  His month of training was full and grueling and challenging but he felt good about it in the end and was almost as happy to be home as we were to have him home…;)

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Wilson’s CIET Graduation…he’s the second one in on the first row. Ft. Knox, KY

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Somebody’s super happy to have his roommate back!

In the week that Wilson has been back Rolf made it home from Chicago, we hosted 18 graduates of the SBRM Residential Recovery Program for dinner, celebrated their accomplishments at a standing room only graduation event on Saturday night and enjoyed quick visits with dear friends from our days in South Central a couple of lifetimes ago…what a rich, RICH week…full of big doses of hope and reminders of God’s grace over and over again!  We have about a week and a half all together before different members of the family jet-set off in different directions so we’re taking advantage of EVERY minute and soaking up some good family time.  Happy Summer Rudy!!

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A couple of dapper dudes at the SBRM graduation.

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The photo credit for this little gem goes to Dale Weber! LOVE it!!!

Cath Report

July 9, 2016 by

We sure appreciate all the prayers and good wishes, texts and phone calls yesterday.  We felt loved and supported and are so grateful.  Rudy’s heart cath went smoothly and we are pleased to report that there is some movement in a positive direction!

First, a little background:

Rudy’s heart surgery back on October 6, 2008 was the first of what was supposed to be a 3-step surgical process that would reconfigure the blood flow in and around Rudy’s heart to accommodate the absence of the two left chambers of his heart.  In that first surgery, Rudy received a shunt (Sano shunt) that connected his single ventricle to his main pulmonary artery to provide pulmonary blood flow (blood flow between his 1/2 heart and his lungs).  The Sano shunt was intended to be a temporary tool to sustain life long enough to get Rudy to the next step in the process known as the Glenn.  The Glenn typically happens between 3-5 months of age but because Rudy encountered so many setbacks after his first surgery, his Glenn was delayed.  For two years, Rudy was monitored closely with the expectation that the Glenn was just around the corner.  However, during a heart cath in October of 2010 (October 21st to be exact), it was determined that Rudy was not a Glenn candidate (or likely a heart transplant candidate as well) due to high pulmonary pressures (a.k.a. Pulmonary Hypertension).

In the nearly 6 years since that devastating cath report, Rudy has had 5 additional heart catheterizations to monitor those pulmonary pressures and help reduce the pressure on his half heart wherever possible through angioplasties, stent implantations and the coiling of collaterals that were beginning to spring up.  The goal was to keep blood flow moving as Rudy grew in size and mobility.  Although we have seen some improvement in Rudy’s pulmonary pressures over the years, the cath report was always the same…not enough improvement to move forward.  So, for 6 years, Rudy has been living in HLHS limbo…in a gradual process of heart failure with no options for treatment.

The reason for yesterday’s cath was to gather detailed information on the current state of his heart as there have been signs in recent weeks of factors in his heart worsening…i.e. high hemoglobin numbers detected in his monthly blood draws, an increase in tricuspid valve leakage detected in his bi-monthly echo exams and bluer lips/extremities in general.  The goal was to see if there is an intervention that Rudy’s body  can tolerate to relieve some of the stress being placed on his heart…ultimately buying him more time until a “longer term” solution can be reached.  Possible options that Dr. Dan discussed with us a couple of weeks ago included replacing the Sano shunt (5mm tube at it’s widest, intended for an infant) with something bigger, a tricuspid valve repair (not optimal as it is a highly invasive open heart procedure) OR possibly a modified Glenn.

7-08-16 Cath Report:

As Rolf mentioned in his quick post yesterday, the results of yesterday’s cath are better than we’ve allowed ourselves to hope for in the last several years.  Dr. Dan used the phrase “ridiculously good” a few times and we’re still trying to process what this really means for Rudy.  In a nutshell, the pulmonary resistance has fallen low enough (so low, actually, that Dr. Dan retested them a few times to make sure he wasn’t getting a false reading!!!) that, in theory, Rudy’s body could tolerate a Glenn procedure (where the Sano shunt is removed, the Superior Vena Cava is severed from the heart and attached directly to the right pulmonary artery and blood flow from Rudy’s body drains directly into his lungs for oxygenation)!!

Now, granted, this isn’t the ultimate destination…the Glenn is just one hurdle in this long journey of treatment but it’s thrilling to think we might just be able to give Rudy a chance to clear it and move on to the next phase.

For all the cardiology geeks out there, here’s a look at the actual images in our post-cath consult with Dr. Dan…it’s kinda cool because it gives a visual of some of the issues I mentioned above.  Unfortunately, Dr. Dan discovered that arterial access to Rudy’s heart through his groin isn’t possible…they’re all blocked so he gained access through his neck instead…not optimal but it got the job done.  He was able to balloon the Sano shunt (controlled blood flow) again and started to coil some collaterals (rogue, uncontrolled blood flow) but, as you can hear in the video, stopped because access through the neck was too difficult.

So, what do we do now?

Dr. Dan arranged the schedule so that Rudy’s surgeon was on site during the cath as well…this was helpful because they were able to look at the images and discuss the results right away.  We didn’t get a chance to talk to Dr. Brian ourselves but I think it’s fair to say that their initial feeling is the Glenn is back on the table.  The plan is for them to present this new information at conference (hopefully soon) with Dr. Harake and the team at UCLA and then we will have a longer discussion with Drs. Brian and Harake about specifics.  I suspect Dr. Harake will want to approach this conservatively and wait until the risk of not doing something outweighs the risks of the procedure itself (which we are on board with too) but I would also like to take some time to discuss the value of waiting vs. the value of moving forward while Rudy is strong in body and spirit.  As I thought about it on the drive home last night and more today, it just feels like, from a non-medical standpoint, Rudy is ready emotionally to move forward.  We’ll see.  Like-mindedness and discernment are key in the discussions ahead…we ABSOLUTELY PRAISE GOD for sustaining Rudy this far and trust His presence will continue to lift us all in the months ahead.

Pictures?  You bet!!…

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Rudy was all smiles when we arrived at UCLA around 9am…he asked us the night before if he could wear his “Lightening McQueen shoes” (actually slippers) and bring his LMcQ backpack and had all his treasures packed before bedtime! Ha Ha He was very proud strolling around the hospital hallway outside registration after checking in.:)

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Rudy took his paperwork from the registration office and handed it in when he reported to pre-op…like a pro!!

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Rudy going 70s retro with Mom’s makeshift headphone securer…Rolf wasn’t too sure about the look but I did get a couple of high fives for my ingenuity from nurses walking by!

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Goofing around with Dr. Sanjay during the pre-cath exam!

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The call to the cath lab…

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Rockstar Rudy!

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We couldn’t go beyond the red line but Rudy didn’t care…he was so chill!

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Rudy’s nurse in the PACU was from Ghana! When I told him Rudy has a Ghanian name – Kweku. George replied, “oh yes, baby boy born on a Wednesday”!! Exaaactly!!! LOVE IT! This was Rudy’s attempt at a smile at discharge…he was still quite loopy.:)

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Since Dr. Dan didn’t do any major interventions and because we got this drill down pat, there wasn’t a need to stay overnight for observation!!! Yay…we were free to head back to SB about 9pm. It made for a long day but we were happy to get back to Max and Olivia…and our own bed!

Rudy has instructions to lay low for a couple of days and he hasn’t been too motivated to do much today anyway…he’s a little sore and groggy still.  So, we’re going to have a lazy weekend and rest up in anticipation of a fun week of Vacation Bible School (VBS) next week at our church.

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You know Rudy’s wiped out when he falls asleep midday while chewing on a truck!

I can’t tell you how grateful we are that Rudy’s original cath date on September 6th was moved up.  Rolf and I consider it God’s grace to be spared a long wait for a cath that is typically preceded by a few sleepless nights.  We didn’t have time to get too anxious this week or brace ourselves for the “punch in the gut” report we’ve come to expect from Rudy’s caths.  Thank you, again, for rallying around our boy with your prayers and acts of kindness and for continuing to journey with us in the setbacks and victories.  God is doing some MIGHTY things, He’s worthy to be praised always and we’re glad you’re along for the ride!!  :)

All done!

July 8, 2016 by

Got buzzed shortly after the last post and figured it would just be the lab giving a status update. Discovered Dr. Dan was ready to give his report. No time to elaborate on that but the term “ridiculously good” was used repeatedly.  Not used to hearing that in a cath conference, so we’re a little bewildered.

We just got back to Rudy in recovery.  Leave it to the little champion to be here smiling and making little pig snorts as he comes out from under anesthesia! If things keep going smoothly we should be on our way home tonight. 

Checked in, Rolled and waiting 

July 8, 2016 by

A brief update while we’ve got time to post:  we had a 9am check-in here at UCLA so we were glad to be spared having to roll in the wee hours. We opted for the slightly longer drive down the coast (as we often do) as it just feels like a more peaceful start to a day like today. 

Demonstrating his ability to get excited about anything, Rudy asked repeatedly if he could bring wear his McQueen backpack and slippers to the hospital (and wore them for hours last evening after packing his toys).  Walked into the hospital like a boss. 


After check-in we moved to pre-op and got check-ins from the docs and kept Rudy occupied until they rolled him to the lab just before 1pm.  Gave us a thumbs up before he went through the doors:


Been close to three hours and we expect it to be quite a while longer. We’re OK with them taking their time. Thanks for keeping Rudy in your prayers. 

The Rudy Filter

July 5, 2016 by

Our family loves the Olympics…whether it’s winter or summer, we look forward to watching them together on TV and making fun family memories simply in our spectatorship.  Our anticipation of the upcoming summer Olympics in Rio catapulted to stellar heights this past week as we watched our goddaughter qualify for Rio in THREE individual swimming events during the trials in Omaha!!  What a thrill it is to watch our dear friends experience a ride of a lifetime and how very proud we are of their trademark humility in the midst of a pretty intense Olympic culture!  Maya DiRado is a class act and will be a fun one to cheer for in the women’s 400m IM, 200m IM and 200m Backstroke!!

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All smiles at Maya’s wedding last year.

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photo credit: Maya’s aunt Kate😉

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So fun to watch our friends have an experience like this.😉

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We sent Rudy’s bib # from the Special Olympics to Maya before she left for the trials and I loved Max’s prophetic sentiment the best…clearly he had no doubt she’d make it to Rio.:) Good luck against the world Maya…no pressure!

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One of the best gifts Rudy has brought to my life (and has been so evident this week) is what I call “the Rudy Filter”.  It’s impossible to do life without my experience with Rudy intensifying it…the celebrations are bigger and the heartaches find their way to a greater purpose.  The experiences can vary drastically like watching Maya accomplish an incredible milestone on the world’s stage or hearing from Wilson while out in the middle of nowhere on a grueling training mission or watching Rudy’s determination when struggling to pick himself up after a fall, but the depth of what my heart feels from day to day is the same and I don’t take any of it for granted.  God continues to use the Rudy filter in my life to turn bitterness into gratitude and uncertainty into peace…and to make the joys even more rich!  ‘Such a valuable gift.  Thank you Rudy!

Speaking of rich joys, we had fun with our friends at the Rescue Mission yesterday.  The SBRM 4th of July BBQ is Rolf’s and my favorite SBRM celebration and the staff & residents did a fantastic job of creating a comfortable and festive event for the homeless in our community.  We missed Wilson dearly but we did get a chance to talk with him briefly during a break he had from his official cadet duties.  He has hit the halfway mark in this month-long army training camp and has just one more “in field” training for the next several days.  He sounded upbeat and is having a positive experience overall.  :)

Happy 240th Birthday America!!!  (photo credit – Dale Weber)

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4th of July at SBRM!!

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Maxo gettin’ creamed!

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I LOVE this picture!…

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…and this one…

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…and this one!  :)  Thanks Dale.

Later in the day, we stopped in to see Max hard at work.  We exceeded the entertainment budget this month with a few extra stops at Kyle’s Kitchen…just checking out the new hired hand in action:

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Rudy ordering his favorite Tomato Basil Soup from his favorite KK employee!:)

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We LOVE Kyle’s Kitchen!!!

Breaking news!!  UCLA called last week to schedule Rudy’s cath and the first available date wasn’t until September 6th…I admit I was a little bummed because I had hoped to schedule it before school started up again…BUT there has been a cancellation and if we can get insurance to authorize it, Rudy’s cath will be THIS FRIDAY!!  Even though moving it up throws us into a bit of a frenzy, it eliminates a ton of stress waiting for a later date and I’m grateful.  Yay!!!  :)  We’ll keep you posted…

‘Lots to process but at the same time lots for which to be grateful!!

 

 

 

A Big Send Off and Reconnections

June 24, 2016 by

We said goodbye to Wilson last Saturday with an early morning drop off at the SB airport.  It took him three flights and a full day of travel to get to Ft. Knox, KY for cadet training that he texted is “real boot camp-style stuff”.  He arrived on base at 9pm, had a 3 hour in-take process, got to bed at midnight and was up to report for duty at 3:30am!!  He said he was happy to get any sleep at all as some of the cadets arrived on base at midnight and didn’t get to the barracks before it was time to report for the day.  He was allowed to call home on Father’s Day and we’ve received only a couple of texts but he sounds good and upbeat…ending each communication with “don’t worry about me”!  Ha Ha  I guess I’m not doing a very good job of hiding my concern for him but I am so proud of his attitude and his willingness to be challenged in this way.

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All packed and ready to go to KY!

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5am airport selfie!

The Sherpa fire continued to rage all weekend but the strong winds cooperated by blowing away from the populated areas of Goleta.  Rolf and Rudy took some time to watch the helicopter water drop refills happening near our home all day on Saturday.  We are grateful for the fire’s containment and the BEAST firefighters who worked it in record heat this past week!!

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A smokey sunset in Goleta!

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Blood Sun

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Rudy cheering on the firefighters!

We definitely felt Wilson’s absence on Sunday as we celebrated the big guy on Father’s Day.  Olivia and Max knocked it out of the park on Rolf’s traditional Father’s Day Tshirt and we had a nice celebration at church.  Although I love special days on the calendar set aside for celebrating, I don’t need Father’s Day to encourage me to appreciate Rolf as a dad more than I already do on a daily basis.  His commitment to his kids is evident in the many ways he chooses to connect with them and the countless ways he serves and provides for them.  He communicates his love directly and indirectly and demonstrates doing life with faith, humor and mad building skills!  :)  GRATEFUL!!!

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Happy Father’s Day!

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Rudy started summer school bright and early on Monday.  He had a great first week getting to know a new teacher and reconnecting with a big group of special ed friends he knows from the different classes he has been in over the years.  Nurse Jessica is filling in for Nurse Sara this summer and Rudy’s transition has been seamless.

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Summer school pick up with Nurse Jessica.

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Bye, Bye Rudy!

Speaking of reconnections, this has been a fun week of reconnecting with dear friends for our family as well!  I find that life often happens in extremes…in a week where my heart has been deeply burdened and entrenched with thoughts of Rudy’s situation and Wilson’s journey, I’ve also experienced the great joy of being with friends who love our family dearly and are BIG Rudy fans…good for the soul and good for putting Rudy’s amazing progress over the years in perspective.

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Our time with the Peters Family on their way through town was much too short but packed with encouragement nonetheless! Welcome back to the West dear friends!!

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Rudy’s adopted family from Ghana made a stop in Goleta to visit us while on a big US tour. Fred and Evelyn are friends from Rolf’s Fuller days and we’ve enjoyed a friendship across many miles over the years. What a joy it was to watch our kids meet for the first time and YOU KNOW Rudy loved all the extra attention. Rudy’s Ghanian name is “Kweku” (which means male baby born on a Wednesday). After a little African lesson, we decided to add to it…”Nanakweku” which means little prince born on a Wednesday. He sure felt like a prince this week with all the extra love from the Dimados.😉

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We are still waiting on Rudy’s cath date…’hope to get it confirmed SOON so I can piece together other summer plans before the summer gets away from us.  I’m starting to get a little nervous and need to balance what I WANT to get done with what NEEDS to get done. ‘Praying for peace today.   Peace to you and yours dear friends!!!!

First Week of Summer!

June 17, 2016 by

Today is a hot and hazy day in Goleta.  The SB County wildfire that made the national news this week broke out in the canyons just north of us Wednesday afternoon.  The sundowner winds we get this time of year have aided in fanning the flames over the past couple of days.  There is little threat that the fire will make it’s way to us but it’s definitely blanketing our community with smoke and a thin layer of ash on everything.  We escaped the smoke and ash yesterday with a trip down to UCLA but we’re back home today and finding ways to keep busy inside.  It is beginning to heat up so we’re praying the firefighters are able to keep their ground and stay safe as the heat, high winds and drought conditions in our area make for serious hurdles in the fight against this wildfire…just the beginning of a long fire season ahead.

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I brushed the ash off my car this morning and then walked back out a bit later to run some errands to find this on my windshield…

So, our first week of summer has been filled with a few key medical appointments for Rudy and some fun too.  Cousin Josh (who is interning for Disney this summer) took time away from the “Happiest Place on Earth” to visit us for a couple of days.  Since we live so far away from both sides of our family, it’s always extra special when family visits.

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Fun with cousin Josh from Alabama!

Olivia’s 8th grade promotion celebration continued at church the following Sunday when the graduates from 6th grade, 8th grade, high school and college+ were recognized.  It’s still hard to wrap my brain around the fact that she’ll be in high school this fall.  :)

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A big congratulations from Pastors Aaron and James.:)

We made two trips down to UCLA this past week.  Rudy had a thorough echo exam at the pediatric heart clinic last Thursday and had his check up at the pediatric dental clinic yesterday as well as a quick conference with Dr. Dan to discuss our plan for the summer.  The good news is that everyone involved in the discussions are in agreement.  Based on information from our bi-monthly appts with Dr. Harake here in SB and the echo results from our trips to the heart clinic at UCLA, there are signs (i.e. high hemoglobin levels, increase in tricuspid valve leakage, bluer lips & fingers in general, etc) that Rudy’s heart failure is progressing.  Everyone is in agreement that there is a need to take some stress off his heart and help it work more efficiently but the question remains whether or not the potential benefits of another open heart surgery are worth the risks.  As Dr. Dan put it yesterday, we could intervene and Rudy could do great and we’d be wondering why we didn’t do something sooner, or we could intervene and make things much worse.  Rudy’s condition may be worsening, but the concerns remain the same and I’m not sure if the pendulum has swung far enough to tip the scale in the opposite direction from where we are now.  Because there are SO MANY conflicting factors and SO MANY pieces to the big picture scenario that’ll be impossible to align “just right”, I’m trying to prepare my heart for the decision to move forward to be based more on faith than hard science…(note: not that this journey has EVER had “easy” hard science answers but one always hopes for it!)

Before making a decision to schedule an open heart intervention which could include a tricuspid valve repair, shunt replacement or modified Glenn, we need to get the cath scheduled…I’m still working to nail down a date.  The goals of this cath will be as they always are:  to measure all the pressures, possibly open up the existing Sano Shunt (controlled blood flow) and definitely coil more collaterals that continue to sprout like a roadmap (uncontrolled blood flow).

So here’s a quick recap of our day yesterday…

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Rudy’s view from the dentist’s chair!

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Rudy got a great report from the dental clinic! Good oral health feels like a major victory and we’ll take it! High Five Rudy!!!

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Next stop? Conference with Dr. Dan. Rudy was more interested in Dr. Dan’s badge than the computer keys. “Don’t let go Rudy!”

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Rudy’s heart on the big screen.

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Rudy the Rascal had the most fun snatching doctor badges as we talked.

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Once we were done with all the official business, the boys ditched the wheelchair and transported Rudy big brother style!

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We played a little elevator bingo…

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…and ran into nurse friends on break.

All in all, it was a productive day at UCLA and I look forward to getting the cath scheduled so I can piece together the rest of our summer.

Today our thoughts and prayers shift to Wilson as he prepares to leave for Fort Knox.  He leaves early tomorrow morning and will be gone for a month of ROTC cadet training.  We’re sure going to miss him around here but he’s excited. He’s a little nervous but knows he’ll be fine once he gets there.  ‘Praying for his safety and that it’s a good experience for him over all.

Thank you all for your continued prayers and encouragement.  God is good and gracious and loving and merciful and constant & my hope rests in Him…always…but especially when personal concerns swirl and thoughts of the broader concerns for our country and global community are on the forefront of my mind as well.  Love and blessings to you and yours dear friends!

 

 

 

 

Welcome Summer

June 8, 2016 by

Yay! Yay! Yay!  Today was Max, Olivia and Rudy’s last day of school and with that summer has officially arrived!  Rolf, Olivia, Rudy and I have an early departure for UCLA tomorrow morning so I’ll keep this brief but want to commemorate the day with a few fun pics…

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We enjoyed a fun visit with a good friend and Max’s godmother this week…Max shot up in height this year making him a whole head taller than Susie-Q!!!…

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…as are Wilson and Rolf! Ha ha

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Goofy Rudy!!

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Olivia’s promotion festivities began with a fun party at school on Tuesday…

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…and the 8th grade promotion ceremony on Wednesday!!!

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Dos Pueblos HIGH SCHOOL (Whaaaat?!?!) Class of 2020!

Because of Rudy’s trip to the heart clinic tomorrow, he had to say goodbye to his teachers and classmates today.  Mrs. Gallo’s class took time to send Rudy off with personal messages and Miss A caught it on video…so sweet!

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Happy Summer Rudy!!! With Miss A, Nurse Sara and the sibs!

Happy Summer to you too dear friends!!!  Let the fun begin!!!

Field Trip, Fun Trip

June 3, 2016 by

We’re finally down to the last few days of school and Rudy is finishing strong…he has had a string of really good days and is enjoying all the extra fun stuff this time of year.  Today was particularly fun.  Rudy and his classmates had a field trip to the Ty Warner (yeah, the beanie baby guy) Sea Center Museum on the pier in Santa Barbara.  Rudy typically doesn’t LOVE the chaos of field trips but he sure embraced today’s outing and had a blast.  It’s so fun to see how far he has come in situations like this…

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Rudy petting a shark at the sea center!

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Rudy had no fear of the tide pool creatures either!…

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…but the water was a little cold resulting in Rudy’s purple fingers!😉

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Nurses Sara and Jessica in the shark cage with Rudy!!

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After visiting the sea center, Rudy’s class had a picnic at a nearby park and Rudy had some fun with Miss A on the climbing structure…

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All the kids got a popsicle AND…

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…a ride on the carousel with Mrs. Gallo!! I’m not sure it gets any better than that!

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Yay Room KB!!! It has been a great year.

Next week is Rudy’s last week of school but we found out yesterday that his heart clinic appt at UCLA was moved up from June 16th to June 9th so he’ll miss his last day of school.  We still have to go to UCLA on the 16th for Rudy’s appt at the pediatric dental clinic so we have some scenic driving to do up and down the coast in the next couple of weeks.  :)  No word yet when Rudy’s cath will be…Dr. Harake’s office is still working to schedule it.

In the meantime, we have some fun 8th grade promotion celebrating to do with Olivia next week AND we suspect we’ll spend a lot of time at Kyle’s Kitchen this summer…Max was offered a job there this week as the newest member of their cashier team!  Woo Hoo!!!  ‘Super excited for him to have his first real job and praying there are some family perks that come with the job!  Ha Ha

Thank you for your prayers as we steam roll ahead toward a summer filled with familiar and new experiences for our family and lots of focus on Rudy’s medical needs.  Ever grateful!

Is It Summer Yet?

May 28, 2016 by

We’ve been seeing so many fun graduation and end-of-the-school year celebration posts on FB lately that it feels like summer has begun for everybody BUT us…Max, Olivia and Rudy still have two, 4-day weeks to finish up but spirits are high and enthusiasm is building for the carefree days of summer ahead.  Olivia is particularly excited as she has the 8th grade promotion party and ceremony to look forward to her last week of school.  Max is busy wrapping up his coursework, doing some prep for his senior year AND interviewing for his very first summer job!!  Fun stuff!  After taking a week to decompress when he got home from APU, Wilson headed back to the car wash and has appreciated a couple of weeks of solid work (and the paycheck & tips that come with it).  I thought there might be a bit of an adjustment having Wilson back home again but life in the Geyling household hasn’t skipped a beat and it’s just great to be together…we’re enjoying the family fun for sure.

As is typical for us every May, there has been something significant on the calendar each day this month which has helped pass the time and keep us out of trouble.   A few of the highlights include…

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Olivia’s last volleyball game of the season ended in a tournament championship. We’re grateful for her fun experience and positive coach!

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Max and Rudy had a birds-eye view of the final playoff game.:)

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Later that week, Wilson and Rudy joined us for Olivia’s induction into the Nat’l Jr. Honors Society at her Junior High School.

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Last weekend we hosted a reunion bbq with a posse of neighborhood girls that have been friends since Kindergarten at La Patera!! Although they all branched out and widened their circle of friendships in Jr. High, they have remained friends all these years…and these are the families that surrounded our family in so many ways the year Rudy was in the hospital…so special…forever grateful!!

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We had the joy of hosting our church’s annual baptism ceremony last weekend as well. I’m not sure we’ve ever hosted as many people at one time as we had people packed around the pool and standing in planters (ha, ha!) but it was such a sweet time and it made me so thankful for all of Rolf’s hard work turning our home into a comfortable place to share with others!

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The recognitions continued for Olivia this week at the 8th grade Student Awards Night at GVJH. She was awarded for her excellence in performance and attitude from the Physical Education department. I told her I was doubly in awe of her because that isn’t an award I would have been even remotely considered for, well,…EVER!!:) Well done Olivia!

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Rudy and his special ed schoolmates enjoyed a field trip to the bowling alley this week and it just so happened that Aunt Cora was visiting us from Alabama too!!!! How cool is that?!?!

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Being goofy with Aunt Cora!

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A little big sister love for Rolfi!

As for Rudy:

I mentioned in our last post that Dr. Harake (SB) and Dr. Dan (UCLA) were discussing whether or not to schedule a cath this summer.  Dr. Dan felt it was important to discuss Rudy’s case with the team of docs at UCLA and revisit our treatment plan before scheduling another cath.  He called Rolf yesterday and rather than paraphrase, I’ll just share Rolf’s email to me below:

“Got a call from Dr. Dan at lunchtime today.  Since I was walking to a restaurant I scribbled notes but wanted to write out the substance here to make it as clear as possible.

 He wasn’t sure anyone had ever communicated back to us after their presentation of Rudy’s case at conference earlier this month.  He said it was a very thorough presentation and extensive conversation—not just a quick review.  He also said that his disposition going into it was not to do a cath anytime soon as there didn’t seem to be a pressing reason to do anything invasive.  That opinion changed with input from the other docs—Dan said he basically talked himself into doing a cath.

 To give perspective he said that, immediately after hearing the presentation, Laks wondered aloud why there would be any need for discussion—the next step is a Glenn.  He hasn’t had it and he’s blue.  That’s what needs to happen.  That’s when people around the table countered with Rudy’s history—even though that was a long time ago and he’s a very different patient, they would still view him as a very high-risk surgical patient.  Additionally, there would need be a huge cath to coil all kinds of collaterals to get him to where he needs to be for surgery.

 Dan doesn’t feel like that would be a good reason alone to do the cath.  The most pressing reason is the Sano—it’s extremely small.  It was sized for a newborn heart that’s grown and now sustains an active child.  Additionally, it continues to get narrowed by the usual tissue accumulation, etc.  This would be the most pressing reason to do a cath.  While they’re there, they would obviously want to get a good look at all the pressures and take care of some collaterals and anything else that might move Rudy toward a surgery.

 Probably the most pressing issue surgically is a Tricuspid Valve Repair.  They feel the leakage there is significant and impacting function of the heart.  If they were going in to do the repair, they would also have to take a good look at doing some kind of modified Glenn, but that again would be driven by really good information obtained via a cath.

 He said that he spoke to Bilal about all this and says there’s agreement.”

So, I’ll give Dr. Harake’s office a call on Tuesday and start the process of getting a cath scheduled some time in August,  I hope.

Although the “big picture” discussions the last 6 years have centered on whether or not to attempt the Glenn or, instead, focus our energy on the heart transplant process, the reality isn’t that straight forward.  It is becoming more and more clear to us that if and when Rudy becomes a candidate for any of the “big” surgical interventions,  it is going to require a process of preparation to get him ready whether it be a series of caths to coil a literal road map of collaterals that have sprung up or an open heart surgery to replace his Sano Shunt & repair a leaky valve.  It can feel a little daunting when you consider each step in the process holds it’s own set of risks and we’re not even talking about the BIG risks that come with the treatment goals we’re trying to get Rudy to ultimately.  It’s also hard to have these conversations when watching friends like Owen battle through those very risks as we speak.  Ugh, looking at the big picture is heavy and it makes our hearts ache (literally) but we can’t stay there too long…our focus needs to shift back to “what needs to happen today?” and trust that we’ll know how to navigate tomorrow’s needs when they come.  As always, we appreciate prayers for peace and wisdom in the process.  Will you add Owen to your prayer list?  He is stable but still in critical condition after a cath earlier this week…a clot in his stent almost took his life on Wednesday and he is now on the top of the list for a second heart transplant!  He and his family have a long journey ahead on an all too familiar and frightening road and we want to help extend their circle of support.  You can click on his name above to get to their family blog or find him on FB (Owen’s Superhero Heart).

Finally, I ask that you add my mom to that list as well…poor Grandma Jo fell a week ago Friday and had surgery to repair multiple fractures in her leg on Monday.  She is now settled in a rehab facility in Lenexa, KS and starting the grueling work of recovery.  No word yet on how long she will be at the rehab facility but it will be long enough that patience and grace will be required.  I know she’d appreciate prayers for strength and pain management at this point too…she’s pretty tired and uncomfortable after her “work outs”.  It’s hard to be so far away in times like these.  Thank you for sharing in lifting her up in prayer dear friends!!!

Kinda feelin’ like summer can’t come soon enough!  Sending you our love and gratitude from the breezy central coast!!!

 

 


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