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!