It’s almost midnight here at UCLA and I’m just getting a chance to sit down and collect my thoughts at the end of a very full day. I rolled out of SB early and made it here by 9am as the PICU team was rounding. Over the past few days, I’ve been in communication by phone with various members of the team and gotten updates on the discussion regarding Rudy’s treatment and discharge plan. We are so grateful that Rudy’s care involves a team of people from various specialties and different perspectives; so it took a few days to gain consensus. But as of this morning it looks like we are working toward a BIG day on Tuesday. In a perfect world, some members of the PICU team would have preferred for us to have a full floor trial, where a significant step down in attendant care would allow the team to see more clearly how capable Trish and I were in providing Rudy’s care. But the hospital has a severe shortage of floor beds so, it’s been decided that Trish will come on Monday and we’ll do something similar here in the unit for 24 hours.
In the meantime, I’ve continued to demonstrate my proficiency in caring for Rudy–administering meds through the G-tube, doing feeds with the bottle and the pump, changing the trach, and changing lots of diapers. Today a technician delivered some machines and supplies we’ll be taking home and showed me how it all fits together–pretty straightforward and the reality of where we’ve spent the last six months was made clear by how familiar all the stuff was to me. I think I stole some of his thunder as he didn’t have to give his full spiel with all the details.
Rudy is still getting a small oxygen boost and some vapor mist from the trach collar around his neck, but tomorrow the respiratory team will take that away so he can breath room air. His 02 sats have been quite high all day (even to the point of setting off alarms), so it looks like he’s ready. He still has the subclavian IV in, but nothing is attached to it as all the IV meds are discontinued. The team has kept the port in so they can easily draw labs–there is still some concern about his potassium and eloctrolyte levels but that seems more a matter of balancing out his meds. While the line isn’t much of a physical nuisance, there have been some strong voices on the team for its removal just to eliminate any chance of infection.
Rudy also needed to get a hearing screen prior to discharge so two nurses came to do that today. We have to admit that we’ve acquired a level of anxiety with just about any test he’s subjected to, so we’ve had our own little celebration in the wake of him passing! Hear, hear, Rudy!
These developments have made for a busy day for me such that I don’t think this post matches the level of excitement we’re feeling. It’s great to be in the home stretch–please pray that these next few days would be smooth, so that Rudy (and his parents) would continue to demostrate that we’re ready to go!