After the week Rudy had, I was eager to get back to UCLA to see him. We’ve written before how it’s usually much harder to be the parent in Santa Barbara than at the hospital when significant procedures are going down, so there were several people who encountered me this week who made mention of the fact that I appeared distracted. There’s no denying that a trach takes some getting used to, but when viewed in terms of all the other things Rudy’s had sticking out of him, it can be taken in stride. It is neat to see his face with only the small tape holding the NG tube in place instead of the vent wrap. Without the hoses coming out of his mouth, he can move around quite a bit more, so we’ve enjoyed making eye contact and having fun today. He sat on my lap for about four hours this afternoon and things were calm enough to the point where we wondered aloud how Stanford could blow a 20-point lead and lose to Cal–ugh.
Rudy had two stretches off the vent today totaling close to five hours. He does this with a small oxygen hose pumping some vapor around the hole as his breath doesn’t get the normal humidity we get from breathing through our upper airways, where saliva creates humidity. (Betcha didn’t know that–who needs the Discovery Channel when you have Rudy’s Beat?) He got really mad at RT Oscar when he came to put him back on the vent, so I think he’s ready for more.
We did have a consult from Dr. Dunn, the Pediatric Surgeon who is going to be addressing Rudy’s stomache issues. I’ve spent much time educating myself on cardiac and respiratory issues, but I don’t know yet how to speak Gastro-Intestinal, so that’s tonight’s internet lesson. The imagery reports we got yesterday indicated that Rudy’s stomache is a bit more horizontal than normal and also has some reflux issues, but there was comfort in Dr. Dunn’s assessment that these were common issues for cardiac babies. A number of big words were introduced to me which Nurse Amy has been kind enough to repeat several times so I know where to start my education. It’s looking like Rudy will have surgery on Wednesday where some of this might be addressed and a GJ tube placed–the team will confer on the appropriate game plan in the meantime.
Many procedures have been attempted on Rudy, but today Nurse Amy attempted the most daunting yet. She came back from her lunch break with hair product and great intentions to try to tame his mane. It worked quite well for a bit but I don’t think they’ve created a substance with holding power sufficient to keep things in check. A couple hours later he looked like Heat Miser again. But Amy should be applauded, because somewhere in the middle of all the primping, Rudy did seem pleased and I was able to snap a picture we’ve been waiting quite some time for: