We sure have packed a good bit of quality time with people we love in the past two weeks…Rolf made it home safely from Rio after sharing a most incredible life experience with dear friends:
Oma came to Goleta and took on Rudy duty for a few days so I could visit my mom & extended family in Kansas:
And Rudy’s godparents visited for a couple of days from San Diego!!!!!:
The visits have been brief for the most part but significant on so many levels and good for the soul nonetheless. We are deeply blessed by the rich relationships in the life of our family and this whole summer, frankly, has been a big reminder of that.
I got home from KS on Sunday and our household jumped back into the swing of the new school year on Monday. Max and Olivia were the first ones to go:
Rudy was next:
Wilson left for APU on Thursday and starts his classes next week. We’re heading down to Azusa on Sunday to take the rest of his things and say our official “goodbye”…it was hard to see him go after our fun family summer together but his excitement about getting back to campus and his friends made it a lot easier this time around. 🙂
We ended this crazy week with an appointment with Dr. Harake (SB Cardiologist). We typically see Dr. Harake within a week of a cath but the appt wasn’t automatically generated after Rudy’s cath in July (as it typically is at the time of discharge) and I dropped the ball on our end as the summer filled up so today’s visit was a little over a month and a half LATE!!! Yikes!!! I felt a little irresponsible after talking with Dr. Harake’s office to set up the appointment earlier in the week. Thankfully Rudy was fine and recovered well from his cath on July 8th but not scheduling a post-cath follow up with Dr. Harake isn’t something we should do in the future.
The discussion today was sobering. Today’s echo showed that Rudy’s atrium is three times it’s normal size and is bigger than it was in May. Our discussion turned to the cath results and how it effects where we go from here. The cath showed that the pressure in Rudy’s lungs has lessened which is significant because Rudy’s high pulmonary pressure (known at pulmonary hypertension) has been a major factor in preventing him from having a successful Glenn and/or heart transplant. Low pulmonary pressures potentially put surgical options back on the table for Rudy. I think it’s fair to say that Dr. Harake sees this as a good thing but doesn’t necessarily see it as a green light for surgery.
The reality is that Rudy has been a high risk for surgery for more reasons than just pulmonary hypertension and those other factors are still present. In addition to the risks that remain, there also remains the question whether or not the rate at which the Glenn will reduce the stress on Rudy’s heart is worth it. In other words, can the Glenn reduce enough stress on the heart to make a noticeable difference? Although it’s impossible to predict an outcome, it is possible to factor a general mortality rate given the variables with which we are working. Dr. Harake encouraged us to think about what an acceptable mortality rate would be for us going into surgery. That’s certainly a difficult question to answer…a tough process to wrap the brain around. We haven’t heard back from the team at UCLA yet but Dr. Harake’s counsel is helpful and we pray the conference on Rudy’s case will bring some clarity. We need good information in the midst of a confusing mountain of unknowns.
Dr. Harake also encouraged us to keep a close eye on ANY possible source of infection whether it be in his oral health or in the redness surrounding an elbow abrasion. He warned us that a topical infection that enters the bloodstream will attack a vulnerable, compromised ventricle with deadly consequences and so it’s important for us to be vigilant in the prevention of infection. (Yikes!) We’ve always known this to be true but today’s warning felt more direct than usual…and heavy in light of everything else. So, prayers for discernment and protection are at the top of the list…discernment in the decision-making process (still) and protection for Rudy’s heart in the meantime. I’m ending the week zapped of energy and guarded…grateful but also concerned. This journey sure can leave one feeling pretty manic/depressive from one day to the next so I’m praying for balance in the midst of conflicting reports as well as stability in this season of adjustments for the whole family.
Here’s one last look at summer:
Happy “Back to School” dear ones!!!