Our home is quite a bit sweeter now that the big sibs are home safely from their trip to KS! All reports are of a great trip to see Gma Jo and the Wilson cousins! I’m thrilled they had a nice time but also really glad to have them home as is Rudy who was too excited to take a nap this afternoon. 🙂
We’ll have Monday to get everyone settled and unpacked and then Rolf, Livy and I will head down to UCLA on Tuesday with Rudy for his cath. We’ve had a couple of little hiccups this past week with a short seizure early Thursday morning (3am) and a shiner on his left eye from a spill on his motorized bike today! He’s happy and no worse for the wear but he sure is keeping us on our toes as we prepare for this cath. 🙂 We’ll post an update on Tuesday…as always, thank you for your prayers!
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.
Since getting the UCLA appointments booked for tomorrow and next Tuesday, Trish and I both admit to an undercurrent of dread and anxiety. The fact that both the Transplant Clinic and Heart Cath only got booked late last week–really short-notice when we’re used to dealing with months of lead time–minimizes the amount of time for brooding but can also create new reasons for worry. Is there some reason why they feel it necessary to see Rudy so quickly? The office mentioned summer vacation schedules but even with this, you can’t help but wonder if there’s something everyone’s concerned about that couldn’t wait until the fall. Or maybe they just had a cancellation and figured they’d squeeze us in cuz they like us and we should stop over-thinking things…
So we made it through the weekend as much as possible by focusing on the here and now–which, when I think about it, is how we’ve learned to navigate life. Rudy’s heart condition and it’s prognosis is always there, even if we only become more focused on it as there’s an appointment or procedure looming. But life goes on with all it’s mundane beauty and simple celebrations of the ordinary–made only more moving when we consider the backdrop.
On this note, we had a pretty big celebration yesterday evening when Rudy figured out something HUGE. Too bad the big sibs weren’t here for it–they may not be able to catch him by the time they’re home!
Pretty easy to focus on what’s going on right now when it’s something like this. Thanks for praying for our time at UCLA tomorrow.
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.
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!! 🙂
My mind is still spinning from all that our family accomplished in the last week and a half but my prayers for a strong finish to the school year have been answered and I’m looking forward to a lack of structure to the “lazy” days of summer ahead of us…I just need a few days to decompress a bit. 🙂 Yay! Welcome Summer!!!
May 30th was a BIG day that included Rudy’s official promotion from his “blended bonus year” to being a full time Kindergartener! Woo Hoo …
May 30th also included La Patera’s 6th grade dance!!! A special “end of the year” event that the 6th graders look forward to all year long! Olivia and a couple of her friends had fun getting ready at our house after school…
Big bro Wilson took time out of his intense study schedule for finals to chauffeur the girls in our neighbor’s Grand Marquis…
Tuesday June 3rd was Olivia’s 6th grade promotion. Rudy sat quietly throughout the entire ceremony which allowed Rolf, the boys and I to enjoy it all…it’s hard to believe it’s our last La Patera promotion…the culmination of so many memories for our whole family!
Thursday June 5th was the last day of school for all 4 kids…Rudy enjoyed his last day in Mrs. Farrington’s class with his La Patera buddies.
There really have been more moments to savor the past 9 days than we’ve been able to document on Rudy’s Beat…Rudy’s smiles have been the biggest I’ve ever seen in the last couple of days since the big sibs have been home…the BEST part of Rudy’s summer for sure! Grateful, grateful!