Clinic Update

We made it home from L.A. just in time to take a dip in the pool before supper.  Rudy is eager to get in the water after a full day buckled in his wheelchair.  Our visit to the heart clinic today was relatively quick…Rudy made quick work of his extensive echo exam by sitting still and cooperating nicely.  We talked with Nurse Flo (the transplant coordinator) over her long list of routine questions and then we waited for Dr. Alejos.  He was needed at the hospital and couldn’t get away so we ended up seeing Dr. Reardon (a.k.a. Dr. Leigh) instead.  We don’t normally consult with Dr. Leigh but he was a fellow in 2008/2009 when Rudy was hospitalized and is quite familiar with Rudy’s history.  Although we would have really liked to talk to Dr. Alejos, it was fun to see Dr. Leigh again after all these years and hear him “oooh” and “aaaah” in amazement over how far Rudy has come.  One thing I like about Dr. Leigh is he’s not afraid to talk about the “what ifs” and he tells it like he sees it.  He took a look at the echo images and confirmed what Dr. Harake told us last week…that Rudy has moved from “mild” to “moderate” heart failure…but feels Rudy is still a ways off from being in “severe” heart failure which would be the next phase in the spectrum.  He did see a narrowing of the arch which he believes may need an angioplasty during next week’s cath but ultimately that will be Drs. Harake and Levi’s call once they get in there.  There really wasn’t a whole lot more Dr. Leigh could tell us.  We knew we wouldn’t walk away from today’s appt with any new revelations or game plan but we’re still left  feeling discouraged over the fact that there is no neat and tidy action step that will prevent Rudy’s heart from failing.

We talked a little about the purpose of clinic…how some patients are there for the transplant process while others are there simply to manage their heart failure and others still are there, like today, to transition from being pediatric cardiac patients to adult management and care.  It was interesting to see the young adults who were there today navigating that very crucial transition to adult cardiac care…once again, Rolf and I walked away from clinic with a glimpse into the giant picture that makes our little corner of the “cardiac world” seem very small…no less significant or serious, just that Rudy is one of many, MANY diverse situations and needs.  Honestly, I don’t know how the heart clinic Drs and NPs don’t leave work every day overwhelmed…I feel overwhelmed for them.  We’re scheduled to head back to clinic in 6 months.

So, our sights are now set on the cath next Tuesday.  Although Rudy has had close to ten heart caths in the past, this one will be different for him. Because he is no longer trached, he’ll have to be intubated which is uncomfortable and will leave him with a wicked sore throat when he wakes up from anesthesia.  😦  A trip to Baskin Robbins may be in order!  🙂  Thank you all for your continued prayers…we are forever grateful for, humbled by  and in awe of the love that surrounds our family.