We set the appointment for Rudy’s next heart cath early in the summer. October 21st was such a long way away. Now it’s almost here–and with it a good dose of anxiety. Back in January, his last cath showed that he was “not a good candidate” (read he wouldn’t survive) the Glenn surgery that his heart needs. The pressures in his lungs were too high (pulmonary hypertension) and they weren’t fully oxygenating his blood. The team was hoping that there would be enough time (at least 2-3 months) for two medications to address the hypertension and to overcome his lung damage. As we’re always on the lookout for the little miracles along this journey, we recognize one in that his little half-heart has kept right on chugging along to give far more time for all this to work…if it’s going to.
So the challenge lies in not letting our minds get swept up in all of the possible scenarios. What if the medications didn’t work? What if the lung function hasn’t improved? What if they find something else? What if they decide it’s time to do the surgery? You don’t want to prepare yourself for the worst; but hoping for the best seems risky given the potential of a let down. When we look at Rudy and the way he’s developing, we really want to assume things are favorable, but heart kids are tough to read and Rudy has proven to be unique beyond that. Until we get good data from the cath, we just won’t know. So, we get sleep when it comes and try to keep our minds from wandering farther than they already do. We’ll have the information soon enough.
We’d appreciate your prayers for Thursday. We’ve got a 6AM call time at UCLA, so we’ll roll out of SB at four. If they do any interventions (angioplasty or coiling collateral veins), we’ll have to stay the night. This is what we’re preparing for as his last two echos might indicate a narrowing of the aorta that may need to be opened up. If they don’t see anything to address, we may be able to get out by the afternoon. We’d appreciate your prayers for a good outcome: 1) for those lung pressures to be nice and low so Rudy would be able to handle the Glenn circulation, 2) for the blood to be fully oxygenated as it’s leaving the lungs and 3) for Rudy’s comfort and safety during the whole process.
Request #3 is especially poignant to us due to his development over the last year. He is so much more active and so much more aware of his surroundings. During his extended ICU stay and most of his follow-up procedures, he was relatively passive and calm. But that isn’t the case now, as evidenced by our ECHO appointment with Dr. Harake this week.
But then he got pretty feisty. I think the paper on the table makes cool noises. Given that an echocardiogram is supposed to give somewhat detailed and precise measurements of the heart, I marvel at how Dr. Harake accomplished this. I wasn’t able to video any of the actual test because I had to hold Rudy down (picture calf roping at the rodeo and you’ll get the idea).
Praying that this spunk will carry him through. Thanks for walking with us. We’ll post updates Thursday as we have them.