Rolf, Rudy and I made it home safely from our check-in with pulmonology at UCLA yesterday. Rudy traveled well and was patient as we stopped to run a couple of errands on the way home but he is clearly most content at home as he proved today joyfully rolling around on the floor…literally ALL DAY. 🙂
This was our first face-to-face with Dr. Pornchai (Tirakitsoontorn) since Rudy’s failed sleep study, so we were eager to hear his opinion on where to proceed from here. We didn’t go in with high expectations–it became clear on our last visit that there isn’t really any therapy or drug out there that would help Rudy’s lung function and most of his recent consults have basically communicated the same thing–Rudy’s stable, but there is no plan–there’s just no way to address anything and move “forward” in his current condition. The failed sleep study seemed to take one of the only remaining steps forward (removing the trach) off the table. So it surprised us to hear Dr. T share that he’d like to give Rudy another turn and repeat the sleep study in about two months. The sleep study showed that Rudy was breathing from his stomach too much and the effort required caused his heart rate to elevate too much when the trach was capped. He’d like Rudy to use the speaking valve all day (which allows him to inhale through the trach but exhale through the upper airway) to see if this helps him over the hump.
One normally doesn’t think of the benefits of one’s kid having a trach, but it is a “mute button” of sorts. We’ve noted a few occasions where Rudy was flexing the golden pipes while the kids were trying to watch TV and the speaking valve somehow “popped off” so he couldn’t vocalize anymore. Of course his parents aren’t twisted enough to use it that way–perish the thought! But that’s not an option anymore, it’s going to stay in all day. Based on the noise in the house today, our little chatter-box sure is exercising something! This will make for some new dynamics in public settings (be ready for Rudy to throw in his two cents at church, friends!)
I’ll head back down to UCLA with Rudy next Wednesday for an appt. with Dr. Shapiro (ENT). As we’ve had those challenges with the trach coming out, we want to get her to check things out…so, we’ll take it easy this weekend and continue to enjoy the great weather we’ve been having.
Thank you for your concern and prayers!!