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.

7 thoughts on “Sunday with Livy and Rudy.

  1. I will be praying specifically for a resolution of the fluid situation. I think you are a wonderful family the way you are handling all of this. I continue to pray for your family through this difficult time.

  2. I will be praying for Rudy’s lymphatic system. Please tell Livy that her hair is beautiful. She looks darling.

  3. I esp. see Rudy’s big eyes in my mind as I continue my prayers for you all and for the complexities his doctor’s are trying to unravel. Love Livy’s hair too! some other little girl will look just as cute! Love, Andrea

  4. Please be assured, Livy, that your new haircut is simply beautiful. You were adorable with long hair and just as adorable with shorter hair. Count me among those who just love it! In addition, I’m sure that someone other young girl will look cute in your hair, too! So that’s like double cute-ness from one haircut!!

    We’ll be praying for Rudy’s fluid output! Love you all!

  5. We loved your Christmas photos–especially the Christmas carol shot!
    Olivia looks as cute as ever with her haircut! We are so happy that Trish’s parents flew out to see you all–what a special gift for
    Christmas! We’ll be praying for that pesky fluid to drain…

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