Thursday evenings I’m greeted by a stack of paper that’s often larger than any facing me at the office. This is the day that the kids bring home their Thursday folders with lots of completed coursework, bulletins from teachers and the like. Lately, most of the stuff has been getting a half-hearted scan but this one stopped me in my tracks tonight:
It’s easy to get lulled into thinking that Trish and I are fighting for Rudy while the rest of the family watches, but Max reminded me of the fact that there are six of us fighting together. The kids may not own this the way Trish and I can, but they are bearing loads of their own. Overall, I am so impressed with them and their ability to navigate this time, thanks largely to people who have come alongside them. They are doing well under far-from-ideal circumstances–with Trish and I taking turns in LA and seeing a different arrangement caretakers after school. On more than one occasion, each of them has said they wished life was “normal again”. The way they tend to display their stress is in feeling emotion out of proportion to the circumstance–a small disappointment becomes a tantrum; minor anger becomes a tirade.
About a month ago Trish and I realized that as important as it is for us to be with Rudy in the CTICU, it’s just as important for us to be in Goleta with Wilson, Max and Olivia. I can’t even begin to thank everyone who has paid special attention to our kids in the midst of this. In addition to praying that Max’s wish will come true, I also pray that he, Wilson and Olivia will emerge intact from the battle. In meeting with a friend this week, he stressed the importance of making sure that they know that we would just as quickly drop everything for them as we are doing for Rudy–and that might mean giving them attention at Rudy’s expense. Challenging to do, but Rudy is being watched closely and prayed for by hundreds whether we’re there or not. So in the upcoming week, we’re intent on making sure that our Christmas, unique as it may be this year, will include times of uninterrupted focus on these three super kids.
It has been a cold, rainy, blustery day here in west L.A. so there hasn’t been much motivation to leave Rudy’s warm room. Rudy’s assignment was to rest, rest, rest today in order to recover from yesterday’s procedure and in preparation for tomorrow’s surgery …he started battling a high heart rate off and on last night and that continued all day today accompanied by red-faced tantrums and general discomfort so he has kept nurse Amy on her toes by setting off his monitor alarm practically every time she sat down to do her charting. Hopefully he’ll be able to sleep well tonight (I know nurse Amy will!). He’s number two in the OR tomorrow so he’ll be transported downstairs late morning/early afternoon. It seems to me that it is taking him longer and longer to recover from his “procedures” so I’m praying tomorrow’s pleurodesis will do the trick for many reasons. Dr. Brian will enter Rudy’s side, irritate or “rough up” the lung and chest cavity lining creating scar tissue so they will fuse together and seal off the pleural cavity. It could take the fluid up to 4 days to stop draining so we’ll have some more waiting to do over the weekend. While he’s in there, Dr. Brian will do some other things to, hopefully, increase our odds of success. The team stopped Rudy’s feeds the night before last and although it seemed his stomach was softer and ready for formula again today they decided not to start the feeds back up again until after tomorrow’s surgery…maybe the extra rest for his stomach will do him some good and make the next attempt at feeding stick!!
Rudy's Beat 