I made it home safely this afternoon but before I left UCLA, Rudy and I had a little bottle-time. He continues to do well with the sucking and swallowing but the big adjustment for him is tolerating any volume more than 1 oz at a time in his stomach. Because he is on continual feeds getting 1 oz. a hour, he isn’t used to getting larger volumes all at once. He’ll continue to get bottle feeds intermittently to allow him to practice oral feeds but he will also continue to get feeds through his g-tube. One reason for this is to help conserve Rudy’s energy before his next surgery. Oral feeds require more energy making his heart work harder so, for now, the g-tube will remain.
The jp-tube, however, was removed today! After 24 hours on breastmilk, there continued to be no drainage from the stomach cavity into the tube so we were able to say goodbye to another line and potential source of infection. The next and last line to be removed is Rudy’s sub-clavian picc through which he is getting his meds. Gradually, they’ll transition Rudy’s IV meds to oral meds (or in Rudy’s case, through his g-tube) so they can remove that line before we go home.
Speaking of “goodbyes”, RT J-Way, Nurse Sam and I kissed the vent goodbye late last night! His breathing continues to be strong and steady. PTL!
Rolf will head down tomorrow to spend the weekend with Rudy…the kids and I will join them late Sunday or early Monday. The kids are excited about Rudy’s progress and all our talk of bringing him home. We’re all excited but also not quite believing it’s true!!! It’s all a little hard to comprehend.