Nurse Amy and I are postulating a theory that Rudy doesn’t like mornings. Today, he started fussing at about 5am and was somewhat agitated right through noon. He wasn’t throwing major tantrums and his heart rate wasn’t extremely elevated, but his breathing was rapid enough that we ended his first sprint at about an hour. Perhaps the extended time off the vent over the weekend tuckered him out a bit and there’s no need to rush as we’re waiting on stomach output to resolve itself. He settled down nicely this afternoon and is just finishing up his second one hour sprint with a bit more comfort.
Not much else to report around here. Several rounds of doctors have swung through today (ICU team, Surgery, GI, Cardio) and they’re all keeping tabs on Rudy, but as the plan for the week is to wait out the chylous acides there’s not much in the way of orders. He had an Xray of his lungs today which satisfied everyone and the cardiology team may do some imagery of his heart, arteries and veins just to make sure there are no blockages or anamolies that would be affecting pressures in his lymphatics. There’s not much expectation that they’ll find anything, but anything’s worth ruling out.
Rudy is bright-eyed and awake right now so I’ll sign off and play with him for a bit. This afternoon I’ve introduced him to peek-a-boo by covering his face with a blanket and then pulling it off. To say he enjoys it might be an overstatement, but it sure has him interested. We’ll see how it takes.
Rudy's Beat 
Peek a boo is good! Glad he is holding his own. Continued prayers and love your way. Cousin Dianna
peace be with you, hope it is a good day…..Dawn’s mom
Have fun! We just keep praying just keep praying!
I’m about 1/2 way through reading Rudy’s story. Nothing short of AMAZING!!! I took for granite how simple Owen’s recovery from the Norwood was. I thought we’d be smooth sailing. HA! Learned my lesson early on.
Now we are dealing with transplant and it scares me silly. Rudy is such a sweet little guy. I still haven’t gotten to the part of why he needed a trach, but I will. You are devoted paretns and I love catching up on your blog.
It’s also nice to hear another’s opinion on UCLA. We could chose a transplant center anywhere in the nation. Since we don’t think flying is a good idea (germs and oxygen), we wanted to stay fairly close and LA is the closest. We visited UCLA and were immedietly impressed. We then visited CHLA and it just solidified our decision to go with UCLA. The cardiology team is fabulous!
It sounds like we’ll be making a visit soon… we’ll stop by and visit!
Where do you stay while you’re there SO very long? Since we’re relocating to the area temporarily for Owen’s transplant (someday)… I’ve been looking around and have NO idea. The triverton house is $120/night and while that’s great short term, it seems crazy long term. If you have advice, I’d love input!
THanks for visiting, commenting and showing me that I”m not the only one at UCLA! 🙂
Andrea
Ron understands Rudy in the mornings – he is exactly the same- out of sorts and fussy! Still praying here!
I dont know to many morning people anyways. So with that said Rudy is as normal as they come. I want you to know I check in almost everyday and Im so glad that you guys have this outlet. Its nice to feel close to you and share this experience with you. I know you have days and when you do I have them with you too. I am always routing for you everyday. Go Rudy Go!!!
Hi Trish, i wanted to share a verse with you.
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort. 2 Cor. 1:3
I am praying that you can have comfort. And i am praying for Rudy!
Love you lots!
Emmy