We’ve been seeing so many fun graduation and end-of-the-school year celebration posts on FB lately that it feels like summer has begun for everybody BUT us…Max, Olivia and Rudy still have two, 4-day weeks to finish up but spirits are high and enthusiasm is building for the carefree days of summer ahead. Olivia is particularly excited as she has the 8th grade promotion party and ceremony to look forward to her last week of school. Max is busy wrapping up his coursework, doing some prep for his senior year AND interviewing for his very first summer job!! Fun stuff! After taking a week to decompress when he got home from APU, Wilson headed back to the car wash and has appreciated a couple of weeks of solid work (and the paycheck & tips that come with it). I thought there might be a bit of an adjustment having Wilson back home again but life in the Geyling household hasn’t skipped a beat and it’s just great to be together…we’re enjoying the family fun for sure.
As is typical for us every May, there has been something significant on the calendar each day this month which has helped pass the time and keep us out of trouble. A few of the highlights include…
As for Rudy:
I mentioned in our last post that Dr. Harake (SB) and Dr. Dan (UCLA) were discussing whether or not to schedule a cath this summer. Dr. Dan felt it was important to discuss Rudy’s case with the team of docs at UCLA and revisit our treatment plan before scheduling another cath. He called Rolf yesterday and rather than paraphrase, I’ll just share Rolf’s email to me below:
“Got a call from Dr. Dan at lunchtime today. Since I was walking to a restaurant I scribbled notes but wanted to write out the substance here to make it as clear as possible.
He wasn’t sure anyone had ever communicated back to us after their presentation of Rudy’s case at conference earlier this month. He said it was a very thorough presentation and extensive conversation—not just a quick review. He also said that his disposition going into it was not to do a cath anytime soon as there didn’t seem to be a pressing reason to do anything invasive. That opinion changed with input from the other docs—Dan said he basically talked himself into doing a cath.
To give perspective he said that, immediately after hearing the presentation, Laks wondered aloud why there would be any need for discussion—the next step is a Glenn. He hasn’t had it and he’s blue. That’s what needs to happen. That’s when people around the table countered with Rudy’s history—even though that was a long time ago and he’s a very different patient, they would still view him as a very high-risk surgical patient. Additionally, there would need be a huge cath to coil all kinds of collaterals to get him to where he needs to be for surgery.
Dan doesn’t feel like that would be a good reason alone to do the cath. The most pressing reason is the Sano—it’s extremely small. It was sized for a newborn heart that’s grown and now sustains an active child. Additionally, it continues to get narrowed by the usual tissue accumulation, etc. This would be the most pressing reason to do a cath. While they’re there, they would obviously want to get a good look at all the pressures and take care of some collaterals and anything else that might move Rudy toward a surgery.
Probably the most pressing issue surgically is a Tricuspid Valve Repair. They feel the leakage there is significant and impacting function of the heart. If they were going in to do the repair, they would also have to take a good look at doing some kind of modified Glenn, but that again would be driven by really good information obtained via a cath.
He said that he spoke to Bilal about all this and says there’s agreement.”
So, I’ll give Dr. Harake’s office a call on Tuesday and start the process of getting a cath scheduled some time in August, I hope.
Although the “big picture” discussions the last 6 years have centered on whether or not to attempt the Glenn or, instead, focus our energy on the heart transplant process, the reality isn’t that straight forward. It is becoming more and more clear to us that if and when Rudy becomes a candidate for any of the “big” surgical interventions, it is going to require a process of preparation to get him ready whether it be a series of caths to coil a literal road map of collaterals that have sprung up or an open heart surgery to replace his Sano Shunt & repair a leaky valve. It can feel a little daunting when you consider each step in the process holds it’s own set of risks and we’re not even talking about the BIG risks that come with the treatment goals we’re trying to get Rudy to ultimately. It’s also hard to have these conversations when watching friends like Owen battle through those very risks as we speak. Ugh, looking at the big picture is heavy and it makes our hearts ache (literally) but we can’t stay there too long…our focus needs to shift back to “what needs to happen today?” and trust that we’ll know how to navigate tomorrow’s needs when they come. As always, we appreciate prayers for peace and wisdom in the process. Will you add Owen to your prayer list? He is stable but still in critical condition after a cath earlier this week…a clot in his stent almost took his life on Wednesday and he is now on the top of the list for a second heart transplant! He and his family have a long journey ahead on an all too familiar and frightening road and we want to help extend their circle of support. You can click on his name above to get to their family blog or find him on FB (Owen’s Superhero Heart).
Finally, I ask that you add my mom to that list as well…poor Grandma Jo fell a week ago Friday and had surgery to repair multiple fractures in her leg on Monday. She is now settled in a rehab facility in Lenexa, KS and starting the grueling work of recovery. No word yet on how long she will be at the rehab facility but it will be long enough that patience and grace will be required. I know she’d appreciate prayers for strength and pain management at this point too…she’s pretty tired and uncomfortable after her “work outs”. It’s hard to be so far away in times like these. Thank you for sharing in lifting her up in prayer dear friends!!!
Kinda feelin’ like summer can’t come soon enough! Sending you our love and gratitude from the breezy central coast!!!