Sunday with Livy and Rudy.

After our two days at home, Livy and I came down together to spend the day with Rudy.  She still gets distracted by her new haircut every so often and tosses her head or stares at her reflection a bit.  More than once she’s come up to ask, “Daddy, does my hair look cute?” with all the rhetorical uncertainty of one asking if there’s going to be gravity tomorrow.  She’s endeared herself to the nurses and that’s resulted in various new experiences:  helping Nurse Denise with labels, Uno with Nurse Katrina and making marshmallow dradles and playing dradle with Nurse Aliza.  Turns out she’s a shark and won all the chocolate.

In the middle of it all, Rudy is continuing according to his own timeline.  A highlight today is how alert he’s been.  He’s been awake for long stretches and looking calmly around the room at us with his big eyes.  The team has been hopeful that he would be able to regulate his own blood pressure without medication and he’s done fairly well with that.  It varies significantly when he’s awake vs. asleep,  but it hasn’t been high enough for any period of time that has led them to medicate.

The primary concern is the fluid on Rudy’s left lung.  The right side has responded very well to pleurodesis and, as Dr. Brian prepared us for the likelihood that he might have to do the left, it’s looking more and more that way.  The fluid output from the left side increases significantly when he’s being fed–since they cut off the feeds yesterday, it’s subsided to a very small amount.  There’s some possibility that, once it all drains, that the tissue on the left side could all pull together and put an end to this, but Rudy’s history wouldn’t make us all too confident in that.  Please pray specifically for resolution on this issue this week–either that it would go away completely on it’s own or that Brian would be able to address it completely with pleurodesis on Friday.

As I’ve said before, this whole situation is puzzling to the team and it causes them to wonder if Rudy might have some kind of anomaly in his lymphatic system.  This would not be entirely uncommon, considering the anomaly with his heart nearby that brought us here.  Should pleurodesis not address the fluid situation or if it ends up simply diverting it to someplace else in the body, there would not be many options to deal with this.  What is troubling  is that, apart from this, Rudy is so strong on all other fronts.  His heart repair is very strong, his hematology is right where it needs to be and his kidneys have shown they can bounce back.  The remaining hurdles of his breathing and his feeding might take time ,but that is something the team knows how to work on.  What’s happening with Rudy’s lymphatic system is very uncommon, among our team and the many colleagues they have consulted with around the country, but we need to get past it so please pray that we would be able to get past this this week.

Tomorrow we’re looking forward to being back in Santa Barbara to celebrate Grandpa Dick’s birthday together and then Trish will assume duty back here on Tuesday.  We pray that your are all savoring your holidays celebrations and vacations.

Two Tubes Removed!!!!!

Though I haven’t seen Trish much since Friday, she’s still a bit giddy about the whole meeting Zac Efron thing.  She won’t stop humming songs from High School Musical so I guess turnabout is fair play after my whole Barbie fling.  It has gotten me a bit nostalgic about my own high school experience in North Jersey and how it parallels life at East High–a fresh-faced milieu of multiethnicity (except most of the kids at Madison High had zits and, amidst the vast Italian-American majority, diversity didn’t extend much further than our German-speaking Austrian family);  the spontaneous song and dance that burst out at most every sporting event (as long as we avoided the section of the bleachers where all the kids in Ozzy T-shirts were smoking); and the expansively choreographed production numbers all of our dances became (if plots to see who could get one of the girls from St. Elizabeth’s to slow dance with you all the way to the end of Freebird count as choreography).  OK.  So it was nothing like my high school.  Let me know when James Gandolfini is coming.

If you couldn’t tell, my spirits are up today because it’s a very good day.  Rudy’s kidney function kept up and was steady overnight.  The team is still watching numbers to make sure nothing gets too high, but as long as he continues to pee, there’s a significantly less concern.  Some of the key numbers (potassium, phosphorus, electrolytes) are even starting to decrease so that means the kidneys are removing impurities from the body like they’re supposed to.  Please keep praying but we can also be thanking God for putting us in a markedly different place than we were yesterday.

The big development today is that Anita and Carol came in to remove both chest tubes today.  Although Rudy has been without chest tubes, this is the first time they’ve ever been removed as opposed to falling out.  There hasn’t been any output for 24-48 hours and the chest Xrays have been looking clear so we’re optimistic that the pleurodesis was effective in putting the chylothorax behind us.  We will continue with routine chest Xrays, but hopefully this front will keep quiet so that we can focus our attention on the other key parts of the battle–breathing and eating.

I’m going to stay with Rudy for a couple more hours and head home this afternoon so Trish and I can be together with Wilson, Max and Olivia for a couple days until we all come back on the 23rd to celebrate Christmas as an ENTIRE family.  It’s going to be hard to leave Rudy, but perhaps a break will give him a chance to rest, heal and be ready for his brothers and sister to hold him for Christmas (remember there’s no tubes).  We’ve mentioned it before, but he really looks beaten up from the week he’s had–huge bruises on his side, feet and arm, a huge incision on his right side from the pleurodesis, stitches on both feet, dressings on both sides from where the chest tubes were along with the usual collection of IV lines.  But NO CHEST TUBES!!!!  What a tough, tough kid!