Rudy had a decent night…he was a little restless with some pain that could be managed with Tylenol so he actually got some good stretches of sleep in between Tylenol doses. Rolf and I took turns at Rudy’s bedside and were mildly annoyed by the IV saline pump that kept alarming for some reason…if it weren’t for the pump, it would have been a pretty quiet night. Ha Ha
It’s 10:45am and we’re just waiting for Dr. Dan to review this morning’s echo and then we’ll be cleared to go! Not bad!!
In general, Drs Dan and Harake accomplished what they wanted to do yesterday in the cath lab. Rudy’s procedure lasted 5 hours and our dream team worked hard during that time to coil a “bunch” of collaterals. Rudy’s circulation is inefficient and so his body is adapting and growing new veins because it wants more oxygen. Rudy’s body is working hard to “fix itself” which is amazing but the problem is that these collateral veins are usually thinner and less organized. Frankly, it looks like a big chaotic web. It’s important for these veins to be “coiled” or tied off to prevent the blood from flowing all willy nilly…making it easier for the docs to control how and where Rudy’s blood flows. Control of Rudy’s blood flow and pressures is an important component to a successful Glenn.
Rudy is still not a slam-dunk Glenn candidate but Dr. Dan feels like we may have an option to do an adapted Glenn surgery down the road but it would be risky…so we would still need to wait until the risk of NOT DOING surgery outweighs the risk of DOING surgery – the same position we are in now. So, we’ll continue to wait and pray for a Glenn green light in the future.
We didn’t talk a whole lot about pulmonary artery pressures and Rudy’s pulmonary hypertension as that wasn’t their focus yesterday. Dr. Dan said he wouldn’t expect a huge change from the numbers they measured in March. The Sano shunt that they opened up with 2 stents last time looks good and Rudy’s diastolic pressure is low (which is good). The intricate details of what’s going on in Rudy’s heart and surrounding area is sobering to us but everyone remains upbeat and hopeful and so do we. Of course, time can really work against us as his heart continues to work hard and enlarge and as collaterals continue to grow, etc, etc but Rudy has lived longer and stronger than most on his team would have thought possible so we continue to trust that God is giving Rudy this extended time between the Norwood and Glenn to see lung growth and healing. He’s kind of stuck in a bit of a Catch-22 and so even though we fully understand that time can be our enemy, we also recognize it is our friend and thank God for each hour, day, week, month, year that passes by!!
Okay, we just got word we can leave! We’ll pick up the big kids and slowly make our way home up the coast – it’s a gorgeous day!! Thank you all for praying and texting…we are so grateful to you and so grateful for Rudy’s caregivers and cheerleaders here at UCLA! We are humbled!!