It’s Monday morning here in Santa Barbara and Trish and I just had a quick breakfast out by the harbor before she hit the freeway to LA. I just checked in with Nurse Veronica and she told me that she was doing some cooking! During rounds this morning, there was consensus that we should try feeding Rudy again. The drainage out of his abdomen has been consistently down (40cc over the last 24 hrs) and, more importantly, yesterday’s labs indicated that the percentage of chyle is very low. I don’t recall the exact unit ratio, but yesterday’s count of triglycerides (which would indicate chyle) was 78. At the initial trauma two weeks ago it was up over 1000, so we’re hoping that indicates that the lymphatics have healed.
They’re starting out with a mix of special formula with no long-chain triglycerides or fats (as these go right into the lymph system). 5ccs per hour at a somewhat diluted setting and we’ll see how it goes. Let me spare articulate formulations and simply say: “PLEASE PRAY! PLEASE PRAY! PLEASE PRAY!” We want to get past this hurdle in the worst way. Rudy looks really good–the team upped his sprints to 2hrs today as he wasn’t bugged in the least by 90 min stints over the weekend, so we’re hoping to have more positive progress today.
Perhaps a mundane detail, but in the evening Trish and I had together yesterday we put together a new crib for Rudy–at home. As all of Rudy’s life has been lived out in the hospital thusfar, it struck me as an act of prophetic hope (like Jeremiah buying a field in a land about to be overrun in wartime, declaring that one day it would be habitable again [Jer 32]). From the time we learned of Rudy’s diagnosis, we put most of the typical baby setup stuff on hold and as you’ve seen by our posts, we are challenged to walk a line between brutal realism and hopeful faith. This action falls in the latter category. Rudy’s home is not in the hospital. The bed he sleeps in is much cooler than the one at home, but it isn’t his bed. I haven’t forgotten about the elevator ride they owe us. We’ll take it someday. We’ll get to make that beautiful drive along the coast WITH Rudy and then he’ll get to sleep in HIS bed. Not sure how that’s going to happen and what further obstacles lie in our way, but this morning I feel the need to express hopeful faith.
Stay tuned for feeding updates!
17 thoughts on “Chow Time! (again)”
Praying for all of you and that you can take that elevator ride soon to bring sweet baby Rudy home where he belongs.
hold on to that faith………we pray for Rudy, and so…..want him home in his own bed….one special little boy and another special HLHS Family…..peace to all….
Praying, praying, praying for all of you.
We are praying.
Can’t wait until that day for you all to experience that. Praying for it to happen.
That elevator ride and passing that threshold is one of the most frightening and exhilerating moment you will experience! I pray it will come soon for you!
Praying hard and waiting in faith to see the field covered in new growth!
I will pray especially hard for the feedings to go well, so that he can soon occupy that crib! I share your cautious hope. Go Rudy!
Dear Rolf and Trish,
Was going through the pile of papers on my desk that you set aside everyday but haven’t decided what to do with and came across Rudy’s birth announcement. I had kept it because it was soooo cute (Trish!) and I was kind of in awe that you had the time and creative instinct to create it in the first place.
It reminded me that I did not know how you all and Rudy were doing. In logging on to Rudysbeat, I am again amazed that you two are holding up. It must be those breakfasts at the harbor! You are so smart! And since I know your other three are of the utmost priority to you, I know you are spending many, many hours making sure all is good with them as well.
Yes, I can pray for you all and Rudy! Thank God it’s enough, because hearing that number, 23 weeks, I feel so inadequate and helpless to do more.
Actually, let me bring you dinner next Monday night okay? Just let me know it’s okay.
Lots of love, Sharol
Good good idea!!!!…setting up the crib, I mean! He’ll be there before you know it…..and before you know it he’ll be growing out of the thing and needing a big boy bed…
Yes we are praying. In fact, Marlin sat at the table for the 1st time since his fall for dinner last night….and in his pain he did not to forget to pray for Rudy.
I hear your eagerness…yes yes! we will pray!
Praying, little Buddy that you like your food.
and can come home to YOUR crib.
Oh, my, yes! Hopeful faith. There is room and more for hopeful faith. What a privilege it is to hold you and Rudy before our God and say, “Have mercy, Lord! Bring resolution, Lord! Thank you for small steps, Lord. Empower each one of those steps and help them to lengthen and strengthen even as Rudy grows minute by minute, hour by hour, day by day.” I am grateful with you for windows into the possible because of our God for whom NOTHING is impossible. May the blessings of peace, joy and hope flood you, body and spirit, as you wait in joyful expectation. May it be so!
I must meet Diana one of these days.I love her spirit.Amen to all she had to say.We are praying!
We are saying lots of prayers that Rudy likes his special chow AND that he gets to sleep in his very own special bed and be with his beautiful family at home SOON !
Rudy we are parying for you all the time. Eat well and get stronger and go home soon. We also want you to come down to San Diego for a visit too. Hugs and kisses as always.
chow chow moo cow little man. I love that you have his bed up. It is an incredible and necessary item for the day he comes home. I am curious which football blanket is adorning his crib?
I’m reading this over a day after the fact so I’ll have hopeful faith that everything went well and pray now that the successful feeds continue!
love & blessings, Linda