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.

Rolf and I got the big kids off to KS Thursday evening and headed home from LAX with our long list of “to dos” we hoped to get done while they’re gone. We no sooner settled in to the quiet house when UCLA called to reschedule Rudy’s heart clinic appt from July 3rd to June 24th…this Tuesday!!!! So we’ve adjusted our schedules to accommodate a full day in LA at clinic.

Shortly after getting the call from clinic, Dr. Harake’s office called to confirm a heart cath on July 1st, again, at UCLA! So grateful for a spot in the queue but it does put my stomach in knots!!

We’ll work on the logistics of it all this next week…stay tuned.

Missing the big sibs!

It sure is fun to watch Rudy’s personality emerge more and more as he becomes more mobile and more verbal.  He’s so happy and goofy.  He has a great sense of humor, is inquisitive and has an astute sense of things going on around him.  When he hears a loud noise coming from the kitchen or picks up on a change in my intonation, he’s quick to ask “What happen Mom?”.  He has such a big heart and is beginning to express concern for others with a pat on the back and a “How’s it goin’?”.  I was thrilled this week when Rudy crawled over to the chair I was sitting in, pulled himself up and clearly said “I wuv you” without being prompted.  Music to my ears, for sure!  These are qualities we hope for and try to nurture in all our kids and it’s thrilling to see them freely flow from Rudy now too.

Ironically, as Rudy’s figurative heart enlarges so is his actual heart.  We touched base with Dr. Harake last week and Rudy’s heart is continuing to get bigger…it’s a slow trajectory but the development of Rudy’s overworked half-a-heart is definitely unfolding as predicted.  In addition to the notable change in Rudy’s heart size, Dr. Harake’s pulse oximeter (which normally reads Rudy’s O2 sats in the low 80s) couldn’t get a reading higher than 71%.  Rudy’s low O2 sats could be attributed to the increase in his physical activity but it’s something to keep an eye on for sure as the severity of Rudy’s heart failure would be assessed by a number of variables including chronic low O2 sats.  After the echocardiogram, Dr. Harake also “downgraded” the tricuspid valve leakage from mild/moderate to moderate…another variable in the big picture.  The tricuspid valve is located between the right atrium and right ventricle and it serves to prevent back flow of blood into the right atrium.

As Rudy’s compromised heart compensates, the right ventricle enlarges so that it can pump harder and this causes the tricuspid opening to become stretched out and floppy…this causes the valve to “leak” blood back into the atrium which creates unnatural pressure and causes the ventricle to work harder and get bigger…etc, etc,etc!  A vicious cycle!

One big “heart failure” indicator that we are NOT seeing yet is lethargy.  Although we’re seeing an increase in cyanosis, we’re not seeing a drastic change in Rudy’s energy level which is why I’m not panicking.  Dr. Harake is going to discuss the latest information with the UCLA team and decide whether or not to get a heart cath on the calendar.  Although I’d like to spare Rudy the discomfort of a heart cath, an updated look at all the things they can measure in a cath would be comforting to me…we’ll see.  Rudy’s next visit to the heart clinic at UCLA is July 3rd.  I guess it’s fair to say that we’re “on alert” but also very much aware that the road to full on heart failure could be a long one and so patience and discernment are key as we continue to monitor the situation from day to day.

As always, we sure appreciate your prayers!!

Our first week of summer vacation was full and fun and now we’re settling into Rudy’s summer school schedule.  Wilson is enjoying his first “real” job at our local car wash, Olivia is keeping busy with her dog walking job and craft projects, Max is looking forward to guitar camp coming up in a couple of weeks and all three big kids are headed to Kansas later this week to visit Gma Jo which will be a fun adventure!  Life marches on and we’re taking the time to cherish it all.  🙂  We hope your summer is a fun and happy one too!!  🙂