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…
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…;)
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!!
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!!…
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.
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!! 🙂
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.
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.
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!!
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. 🙂
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:
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!!