Joy In The Journey

Heart Update:  Rudy saw Dr. Harake this week for his routine cardiology appt.  I’m always eager to touch base with Dr. Harake and find out where we stand.  The echo this month shows a bit of an increase in Rudy’s heart size.  Enlargement of the heart is expected in HLHS patients.  Rudy’s little half a heart is not capable of pumping the blood his body needs effectively so over time it will get bigger and will ultimately lead to heart failure.  Surgical interventions (i.e. the Glenn and Fontan) help alleviate some of this pressure on the heart and slow down its enlargement but it’s a side effect that we’ll always need to keep a close eye on whether Rudy is able to have future surgical treatments or not.  The notable change in Rudy’s heart size is concerning but Dr. Harake’s response was calm and matter of fact.  He would like us to make an appt. with Dr. Alejos (who directs the pediatric heart transplant program at UCLA) to simply touch base and discuss options, if any, Rudy might have.  We talked to members of Dr. Alejos’ team at the heart clinic back in May but we have yet to talk to Dr. Alejos directly which Dr. Harake would like to see happen so we’ll follow up on that before our next cardiology appt in February.  The change in heart size is not severe enough that we need to act quickly but a reminder that we do need to be actively thinking about our next step should Rudy’s condition decline.

Even the slightest change in Rudy’s status can cause our hearts to sink and send us into a bit of an emotional tailspin but the reality is that this is just an extension of the path Rudy has been on for 5 years…nothing new, nothing we weren’t warned about.

It all just makes the joys in this journey even sweeter…honestly.  One of the greatest joys in our journey with Rudy has been the amazing people with whom we share similar paths.  Because of everyone’s complicated lives and the distance between many of us, much of our communication with other heart families is via FB or email but once in awhile we get the great joy of hanging out in person and we got to do just that with one of our favorite heart heroes last weekend when we were up in San Jose.  The Nelson family was kind enough to take time out of their holiday weekend to spend a day with us and we soaked up sweet time with Moriah, her parents, little brother and brand new baby sister!!  Honestly, Moriah’s smile when I said “hi” to her filled my whole being and I felt I was walking on holy ground when she and Rudy interacted…they are sweet buddies and I’m so grateful for the little visits we’ve gotten to share with Justin, Victoria and their precious family.

We sure packed our 2 1/2 days in the Bay Area full of fun activities and friends who we haven’t seen in a very long time…all of which was good for our souls!  Happy December friends…Wishing you all joy, joy, joy!!!!