We were blessed by a quick visit from Dr. Dan this weekend who was in town to run the SB 1/2 Marathon!  He told us proudly when we were down for Rudy’s cath that he was going to run in Rudy’s honor so we outfitted him with a “Team Rudy” shirt.  We threatened to pull our sponsorship if he didn’t finish…thankfully he performed well and from the looks of the picture he texted us below, he had a good time too.  Thanks Dr. Dan!

Rudy and I head down to UCLA early tomorrow for another Bronchoscopy…the purpose of this procedure is to remove the scar tissue in his airway in preparation for trach removal.  Rudy’s ENT, Dr. Shapiro, has scheduled an overnight stay in the PICU for observation and we should return home on Wednesday.  It doesn’t sound like much fun but it’s pretty routine and we trust Rudy will bounce back quickly.  Once the scar tissue is removed, we can schedule the sleep study at Children’s.  It sounds like this can take a long time to get in the books so we may not get in before the holidays – we’ll just wait and see.  In the meantime, Rudy is getting alot of practice with his speaking valve these days – so much so, that the big kids asked recently if we could take the valve off because Rudy was making so much noise they couldn’t hear the movie they were watching.  Ah, the luxury of having a little brother with volume control!!!  We’ll have some big adjustments ahead when that trach comes out permanently!  Ha

Yesterday was Rolf’s and my 18th Anniversary and, ironically, we’ve had a number of people ask us recently how we (as a couple) are doing so I’ve had our relationship on my mind quite a bit lately.  It seems appropriate to share a bit of an update on Rudy’s Beat as this is part of the journey.  We’ve purposed to be transparent and detailed in our account of our life with Rudy primarily to encourage people to pray…to pray informed, passionate prayers on our behalf because from the very start we were keenly aware of our inadequacies and our desperate need for God in all this.  We’ve experienced an abundance of God’s grace throughout this journey and a good bit of that grace has spilled over into our relationship as well.  I think I’ve mentioned it before but Rolf and I do pretty well in crisis…this is by far the biggest life challenge we’ve ever faced together but we have always been good partners in hard times.  I’m deeply grateful for this and I  don’t  take it for granted.  We’ve learned over the years that humor and not taking ourselves too seriously serve our relationship well in times of crisis and since Rudy’s diagnosis, we have given each other a pretty wide berth…trying hard to keep the emotions and responses to one another (and the things not done or said) in perspective of the big picture and to not take the negative stuff too personally.  This coupled with an occassional “check-in” counseling session has helped us really love each other in this and not turn on one another in fear or pain. 

This is a good place to be in while navigating crisis but not a great place for any relationship long term.  Where Rolf and I are challenged is in our ability to set aside the demands of Rudy’s care and our family to really prioritize each other.  We’re so great at “family” but challenged, at times, at “us” and we’re both feeling it.  Giving each other “a wide berth” is an expression of grace but gone unchecked too long and that “wide berth” can become an unhealthy distance and we want to guard against that from happening.  I wonder how we transition ourselves out of “relationship-survival mode” and into a “new normal” where attention to the details of “us” gets first dibs.  Where does the energy and creativity and focus come from when life is at its fastest and most stressful?  And so, we pray and ask for continued grace as we seek to grow in our love for each other and make year #19 even better than the 18 before it.  Happy Anniversary Rolfi…I’m glad we’re doing life together!

Today was a low key day getting Rudy settled again and trying to put what we learned yesterday into perspective.  Rudy is bouncing back quickly…he woke up uncomfortable and fussy but perked up after a dose of Tylenol.  Rolf and I have been walking around in a bit of a fog not getting a whole lot accomplished but I’m thankful we had today to decompress. 

So, now we sift through all our questions and try to figure out what it all means.  As Rolf reported yesterday, Rudy’s lungs have not shown any improvement and because of the high pressures and his chronic pulmonary disease, he is not a candidate for the Glenn.  His lungs would not be able to support the recirculation of the Glenn and he would, most likely, not survive.  Needless to say, we are deeply disappointed.  As it stands now, the Glenn is off the table.  Unfortunately, Rudy would not be considered for a heart transplant either for the same reason.  He would need healthier lungs to support the acceptance of a new heart.  We didn’t inquire about a complete heart and lung transplant…it’s too early in the process to consider that, I think. 

Both Dr. Harake (SB cardiologist) and Dr. Dan (UCLA cardiologist) agreed that the good news is Rudy is content, happy and growing in his present state.  The shunt put in his heart during the Norwood procedure at birth has narrowed a bit (started out at 5mm and is now at 2.6mm) but is in good condition, allowing the necessary blood flow and his right ventricle is strong so he is in a “safe” place while we wait.  Dr. Dan also pointed out (and we agree) that eventhough the results are not at all what we hoped for, they are definitive results making it very clear we are not to proceed with the Glenn.  If there had been a slight improvement in the oxygen levels or a decrease in resistance, we would have found ourselves in a gray area with the temptation to move ahead potentially putting Rudy at great risk.  Now, it’s very clear we wait.  What we’re waiting for, however, is not so clear.

Drs. Dan and Harake didn’t want to comment too much on what options we may have until they conference with the rest of the cardiology team (which will happen early next week) as well as Dr. Shapiro (ENT) and Dr. Pornchai Tirakitsoontorn (Pulmonologist).  It just so happens, we have a scheduled appt with Dr. Pornchai on Tuesday morning at UCLA and a follow up appt with Dr. Harake here in town next Friday so we should have more information by the end of next week.  The bulk of our questions are for Dr. Pornchai at this point…we need to find out if there is ANYTHING we can do to help improve the health of Rudy’s lungs.  Dr. Harake wants us to continue the two Pulmonary Hypertension drugs Rudy has been on the past 6 months.  We hope Dr. Pornchai will know of any other medications or therapies that might address the ventilation and circulation issues in Rudy’s lungs.  Dr. Pornchai has always been optimistic that the lungs would regenerate as they often do in the first 2 years of life.  Since Rudy is now two, we wonder if there is still hope of regeneration or if we have maxed out on that window of opportunity and his lungs are as good as they are going to get. 

Drs. Dan and Harake were able to reassure us, though, that we’re not dealing with a ticking time bomb.  When Rudy begins to outgrow the Sano Shunt, it will be a gradual thing that Dr. Harake will be able to monitor during our monthly echo appointments.  As far as we understand at this point, if Rudy were to outgrow the shunt and his lungs were still not ready for the Glenn, they could put in a bigger shunt.  People have survived years with shunt replacements.  Of course, this is not the best case scenario for us but it is comforting to know we’re not on the lookout for sudden heart failure! 

There is still alot of discussion that needs to happen among the doctors involved and we’ll take our time to wade through all the information but, for now, we feel we need to make a big mental shift and proceed as if the Glenn is not an option in the near future.  This is significant because there is quite a bit in Rudy’s care that we have shelved until “after the Glenn”.   We feel (and Dr. Dan agrees) that our next step is to go to all of Rudy’s specialists and let them know that the Glenn is not an option and inquire as to how they would proceed in caring for Rudy in their area of expertise.  Things like….revisit the plan to decannulate with Dr. Shapiro, talk to Dr. Kelts about Rudy’s food aversion and getting him to a food clinic of some kind, maybe changing the approach to his physical therapy, etc.  Our primary concern has always been Rudy’s quality of life and that hasn’t changed but “quality of life” now has a broader definition.  We don’t believe that Rudy’s condition is as good as it will ever be but we also feel like we are at a point where we need to provide an opportunity for Rudy is develop as much as he is able to in his current condition and not wait for his condition to improve as we have been for fear of putting too much stress on his heart, etc.  We’re still not sure what that means for us exactly and we’re still trying to process our feelings about it all but we have hope, a deep trust in the power of God and love for each other so we walk in faith that these things will indeed remain throughout this journey – wherever it takes us.

Rolf and I are also very grateful for the care and concern we felt from Dr. Dan and Dr. Harake in all of this.  Dr. Harake said at Rudy’s monthly appointment on Monday that he was so proud of Rudy and yesterday he sat with us for a long time as we absorbed this information and reiterated how exceptional Rudy is…very tender in his communication to us.  We were touched this morning by a follow-up call from Dr. Dan to not only check on how Rudy was doing physically after his day in the cath lab but also to find out how Rolf and I were doing…so patient to address and affirm our concerns.  One thing is for sure, we couldn’t be in better hands and we are grateful Rudy has a team both here in Santa Barbara and in Los Angeles that care deeply for him.  We are blessed by them and you!  Thank you for all the amazing comments, emails and Facebook messages…for your prayers and for feeling the hurts as well as the joys with us.  We are overwhelmed with mixed-emotions but we are ever-grateful. 

Our string of very special guests (that began last May with Rolf’s cousins from Germany) ended this weekend with a visit from our friend Susie…particularly noteworthy as she is Max’s godmother and now lives in Kansas so we don’t get to see her very often.  Reconnecting with old friends with whom you have special, shared experiences always brings an extra measure of comfort and reassurance, for some reason.  🙂  We’re glad for this time with Susie-Q.

This weekend also held “a first” for me, Rolf AND Rudy…Thanks to Rudy’s connections, we were invited to a Hindu wedding.  Dr. Sonal Ram (yes, one of Rudy’s docs at UCLA) married Dr. Robinder  Khemani (an attending at Children’s Hospital L.A.) in a tradional Hindu ceremony on the most beautiful farmhouse property in Los Olivos.  We were honored to be invited.  My fears about being in a remote part of the Santa Ynez Mountains miles from any medical help were quickly relieved when we realized that there were about 300 medical professionals among the wedding guests and 6 (or more) were a part of Rudy’s team specifically!!  Ha Ha  What a treat it was to steal away to a magical place for a few hours and nurture relationship with some of Rudy’s docs & nurses OUTSIDE the context of a hospital – a rare opportunity, indeed!

Our journey with Rudy brings a richness in relationship and new experiences…on all kinds of levels.  Another “first” for which we are grateful.  Congratulations Dr. Sonal!!

We couldn’t have had a more gorgeous day for the AHA Heart Walk on Saturday…35 friends joined our family for the walk and cake celebration after the 5k stroll along the waterfront in Santa Barbara.  (A fun mix of friends from the Rescue Mission, my Bible Study, La Patera Elementary School, Coast Community Church, NurseCore, and Los Angeles…and, of course, Grandma Jo!)  It was a day of laughter, tears, celebration and thoughtful reflection.  We were blessed by the outpouring of support and thrilled by our team’s fundraising effort totaling over $8,000.00!!  Thank you, all, for this impressive collective effort!  Wilson, Max and Olivia embraced the day and were enthusiastic participants of the walk…they inspire me!  I’m so grateful Rolf and I get to do life with them.  🙂

Like a great deal of this journey, the pictures tell a better story…

Phew!  All of our “BIG” events are done now before Rudy’s cath on the 21st.  We’ll have some last minute fun with Grandma Jo before she leaves on Wednesday and then get ourselves organized for the quick trek down to UCLA…Thank you dear friends!