I have found that keeping busy with some sort of project in Rudy’s room keeps me from obsessing over Rudy’s numbers and “hiccups” from minute to minute. As a result, I was able to get Rudy’s birth announcements out in October…our Christmas cards in December and this month’s project has been to compile a binder of “Rudy’s Beat”. Today is our 16th week with Rudy at UCLA and I spent part of the day skimming previous entries as I arranged them in the binder…an amazing trip down memory lane in the midst of a chapter that is still being written!
Rudy had a good day…like yesterday, he rested soundly for most of the day and looked real comfortable. It was a full day in that we had a number of consultations with doctors in various fields to help determine our next steps. Today’s focus was infection. After Monday’s struggle, a number of cultures were sent for testing and they came back positive for infection…so far infection was found in his urine, in his ET tube (bacteria that has been present around the tube for some time) and also in his picc line. They started antibiotics yesterday which have helped already. The challenge is addressing the bacterial infection in his picc line. Normally the choice would be to simply remove it and put another line in somewhere else. Unfortunately, the nurse practitioner who puts the lines in for Rudy has been unsuccessful in getting a line in some other place…there just isn’t any more access. There was talk of attempting to put another line in surgically but I think the plan now is to try to salvage the one he has for the time being. We are still waiting for the results of an additional test to determine if the bacterial infection is isolated in the picc line or if it’s in his blood. So, feeding is still on hold until the infections are cleared up.
Thankfully, none of this has interrupted the weaning process. Rudy started the day at 14bpm and is now down to 10bpm with a pressure support of 10!!! If he holds steady with these settings tonight, then he’ll start sprinting again tomorrow. We are so close to getting off the vent…the closest we’ve been so far, at least.
Although Rudy isn’t getting feeds to his stomach, adjustments have been made to his nutrition through the TPN he gets in his picc line…the reduction of glucose seems to have helped Rudy’s ability to breath easier already and that’s encouraging. Since the plan is to not feed him until the bacteria issue is resolved, the stomach contrast test and the insertion of the NJ tube to his intestines has been put on hold. Rudy decided he was done with his feeding tube through the nose this morning and pulled it out himself! Not a big deal since it wasn’t being used for feeds anyway but Dr. Lee replaced it with and OG (oral gastric) tube through his mouth which is currently helping to vent his stomach and get rid of all the extra air that was causing his stomach to balloon quite a bit. As a result, his stomach looks much smaller and feels much softer which must feel more comfortable to Rudy!
All in all, we’re in a good place respirtory-wise and the infections are treatable so I’m encouraged and optimistic! We had a super time cuddling this afternoon and we’ll get another chance to cuddle tonight in front of a movie…Dr. Sonal brought us “Stardust”. Happy 16-week birthday big boy!!!