Spring is definitely in full swing around here…Wilson’s birthday is now a distant memory, the sorrow of Holy Week is fading, the great joy of Easter is still fresh in our hearts and Mother’s Day is just around the corner! We had a fun, full Easter celebration yesterday and hope you did too. 🙂 In addition to all the familiar events the spring season holds for our family every year, Rudy was invited by one of his La Patera classmates to a fun birthday party this past weekend…a party that included a bounce house…a new favorite to add to Rudy’s top 10 list!! Ha Ha He had a blast and was clearly pleased to hang out with school friends outside of school. It was fun watching him have so much fun. 🙂
We saw Rudy’s cardiologist last week. The routine appointment didn’t hold any surprises…there is no change in Rudy’s heart function. Dr. Harake feels like there isn’t much need to schedule a heart cath at this time so it looks like we may have a procedure-free summer…which would be great.
The topic of our discussion this visit was the risks we face as we wait. Since the Glenn (the second in a series of heart surgeries to reroute the blood’s circulation) is likely no longer an option and the possibility of a heart transplant is still to be determined, we are forced to wait patiently. What are we waiting for? For the risk of NOT doing something to become greater than the risk of doing something. As long as Rudy continues to grow and is happy (dare I say “thriving”), there is little reason to move forward in treatment. It has taken me a long time to be content with this internally…although I’ve been patient and have trusted Rudy’s doctors every step of the way, I have approached each check-in with the SB and LA cardiologists with great anticipation of “the next step”…wanting something tangible…a date in the calendar…an action step (emphasis on action). This need for a plan is becoming less urgent…I still get a little antsy around check-ins but mostly these appointments sneak up on me and I don’t have big expectations going into them (a good thing). So, as we wait, there are two main things we are looking for…signs of heart failure (which would put us on a faster track toward determining Rudy’s eligibility for a heart transplant) and signs that Rudy is outgrowing his shunt (which was the topic of discussion with Dr. Harake last week).
What is currently keeping Rudy alive is a tiny 5mm tube (called a Sano Shunt) that was placed by Dr. Brian when Rudy was 5 days old. In Hypoplastic Left Heart Syndrome patients, the most urgent problem is that the heart is unable to pump blood to the body. The goal of Rudy’s first heart surgery (the Norwood) was to connect his single ventricle to his body’s circulatory system disrupting blood flow to his lungs and so an alternative path needed to be created to supply blood his lungs. The Sano Shunt allowed (and continues to allow) for this pulmonary blood flow. The shunt was really only intended to be used for a few months until the Glenn procedure but it continues to serve Rudy well 5 1/2+ years later!!! Rudy had 2 stents placed in his shunt back in 2012 to open it up as it had decreased to about half of it’s original size over time but other than that, Rudy’s original shunt has gone untouched. Although we have spent a good bit of time thinking about and planning for the possibility of Rudy’s heart failing, what will likely happen first is that he will outgrow his Sano shunt. We haven’t talked to Rudy’s surgeon (Dr. Brian) in a long time but since nothing has changed in Rudy’s status, the expected course of action would be to replace the shunt when the time comes. I’m not sure how surprising it is to the medical community that the Sano has lasted as long as it has in Rudy’s case but it sure seems like we’re getting our money’s worth and then some…thanks to Dr. Shunji Sano’s work, Dr. Brian Reemtsen’s skills and God’s sustaining power in it all! 🙂 We are grateful that Rudy’s body continues to thrive with such a narrow path of blood flow centered in a very small fraction of his body…simply AMAZING!!!
Speaking of “amazing”, here are some amazing moments from the past couple of weeks…
We’ll certainly keep you posted of any changes but for now we anticipate a summer full of wet fun as Rudy sprouts some fins and learns to swim!!!!