This sure has been a crazy winter…polar vortexes, record high temps and drought in southern California, record low temps and crazy amounts of snow everywhere else…with all the talk of high and low pressure systems on the daily weather report in recent weeks, my ears perked up today when Dr. Harake started talking about high and low pressure systems in relation to Rudy’s heart! Wait! What branch of science are we talking about?
We had a routine check-in with Dr. Harake and talked a good bit about our consult with Dr. Alejos at the pediatric cardiomyopathy/transplant clinic at UCLA last month. Although Dr. Harake is in regular communication with the team down at UCLA, it’s important for us to be in communication with them as well and Dr. Harake encourages it…he just wants to make sure we’re all on the same page and not missing something. It’s pretty clear to us what Rudy’s options (or lack of options) are at this point and we agree with Dr. Harake that the best course of action is the one with the least risk (i.e. when the risk of NOT doing something becomes greater than the risk of doing something, we move forward…until then we stay put).
With that said, our discussion today centered on where Rudy is ultimately headed. Dr. Harake likened what is going on in Rudy’s heart to an accelerated aging process…it’s working hard and, as a result, it’s aging fast. Rudy’s little right side of his heart was intended to pump blood to his lungs – a LOW PRESSURE SYSTEM – but instead we’re asking it to pump blood right now to his lungs AND his body which is a HIGH PRESSURE SYSTEM! The extra pressure is and will continue to take it’s toll on the rest of Rudy’s body as well as his heart. His other major organs are, like his heart, enlarged and will be problematic over time…an indication of congestive heart failure. Rudy’s heart rate was a little low today so Dr. Harake ordered another Holter monitor test…the last Holter we did was over a year ago so it makes sense to do it again anyway. We’ll have the small monitor placed on Feb. 18th for the 24 hour test so he can wear it to school and therapy that day…it will be great to get data during his most active times. I suspect all will check out okay. If the low heart rate and enlarged organs were, indeed, an indication of heart failure, we expect his demeanor and stamina would change as well which certainly isn’t the case so it feels like we’re really in season of monitoring and establishing baseline data with all these tests. Dr. Harake is going to talk with Dr. Dan and discuss whether or not to get a heart cath on the calendar. Other than that, the plan is to lay low… to wait and watch. Thanks for waiting and watching with us!
Warm hugs and love to all our friends and family buried in today’s snowfall…stay warm!!
Rudy's Beat 
We all do exactly that, Trish – wait and watch with you and Rolf and the big kids. We watch miracles happening – not the miracles you wish could happen, that I know. But others that are beautiful and real and life-changing for you and all who know you. Thank you for sharing so beautifully and honestly in this space these last 5+ years. I read every post and pray for you all as I do.
Loving and praying for you through all this pressure!!!!
Praying for you all! Most of all, to stay healthy from cold and flu…you don’t need that.
I am praying for you during all the waiting and watching. It can be so hard to wait and watch. But I am so confident you have God sitting next to you as you do so. May you continue to find God’s comfort and peace. Much Love to you.
Such a journey for all of you. Praying for wisdom, hope, peace and healing. Love you guys.
May God great grace and peace be with you as you hold HIS hand and walk on this path. May HIS presence be very real to you each step of the way. And may you sense HIS great love for you from HIM and HIS people….as we continue to pray for you!!!
Rudy, while all of your supporters pray for you, you just keep having big days at school and fun watching football with your Dad and receiving the exceptional care of your Mom and interacting with Wilson, Max and Livy. Your happy demeanor is a support to all of us who love you so much. We know God has the plan for you all set up..all we have to do is TRUST Him……….Loving you today from snowbound Kansas!
Praying dear ones and sending love as we wait with you!