‘Just a quick note to let you know that we saw Dr. Shapiro yesterday (UCLA ENT) and all looks good in her area of expertise. She said Rudy’s airway looks “beautiful” and even let me take a quick look down the scope – very cool. She’ll want to follow up with us sometime in April after the repeat sleep study (yet to be scheduled). Just like last time, if Rudy passes, we’ll plan a strategy for decannulation but if he doesn’t then we’ll want to make a point of seeing Dr. Shapiro more regularly until he is strong enough to wean. She did prescribe a bigger trach size since our big boy is growing out of his current size…which is why we’ve had such a time with his trach working itself out lately. The new trach tube size will be the same in diameter but longer so it’ll be more secure. ‘Hopefully this will eliminate the deluge of late night trach changes we’ve had recently.
Hey! Speaking of “deluge”, Rudy overcame another big developmental hurdle on Tuesday evening. Check this out!…Wunderkind can now get himself out of the sitting position when he gets tired!
After a bit of a plateau, it’s fun to watch Rudy in a season of rapid progress mastering new skills of which he is so clearly proud!…and all of this growth & progress is being supported by a shunt 2.6mm in diameter through which ALL of his blood is being circulated!! Amazing…thank you Jesus for each step forward (both big and small) for Rudy!!
Rudy’s been working hard with his physical therapy and today was a milestone day:
Yes that’s right, he has the ability to go FORWARD now. He’s been able to push himself back in his car for sometime, but going forward hasn’t been as easy. A big reason this is possible is that he’s able to straddle this car and sit up by himself for so long. Pretty cool–it’d be a shame to have such a nifty car that makes all those noises and not be able to go places.
Rudy’s doing well with the speaking valve in all day. He’s needed a break a few times where he got tired and we needed to take it off. We generally are finding that we need to give him a bit more oxygen flow to keep his sats where we like them. He babbles a good bit, but has long quiet stretches where he just takes it all in and quietly contemplates things.
Not like he’s ever had much problem sleeping, but he really goes out like a light after a day of such exertion. So much so that he didn’t even realize he was having a slumber party with Livy:
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.
It seems to have become our custom to start off the new year with a round through all of Rudy’s doctors. Last week was cardiology, endocrinology and labs. Tomorrow (Tuesday) we’ll hit the road early for a pulmonology appointment at UCLA. This will be the first time since we learned that Rudy failed his sleep test so we’ll be interested to see if there’s any course of action to address this. Hoping so, but also preparing for another one of those inconclusive outcomes that come with our confounding little patient.
Of late we’ve felt like we’re stumbling through a lot of life–so we welcomed the confounding 80-degree weather here in Santa Barbara this holiday weekend and headed for the beach. Along with this respite, there come the daily ones from taking joy in the moment and embracing it when the opportunity comes. Tonight at dinner we had one of those moments. Just had to give you a taste via video:
This weekend was one of those special celebrations that marks the passage of time and reminds you that life sweetly marches on…:) We were blessed to participate in the wedding of Kristina Drummond and Sam Fluitt. We first met Bob and Kathy Drummond and their girls (Kristina and Amy) almost twenty years ago and over these past two decades, this special family has grown to be our dearest friends…family away from family! Having had both Kristina and Sam live with us at different times in the past couple of years, our whole family feels a special connection to this weekend’s bride and groom and we were all so honored to participate in the ceremony in some way…
Rudy actually had a tough time during the wedding and reception with two occurances of his trach coming out while on Wilson’s watch which, understandably, rattled big bro…Rudy was fitful and not easily comforted most of the day. Because we have had a challenging couple of weeks with trach issues and more discomfort than ususal, I’m eager for our appointment with Dr. Harake tomorrow morning. It’ll be good to check in with cardiology. ‘Thankful, though, that the wedding was a special memory maker for the rest of us and Rudy hung in there allowing the weekend to happen for our family! I sang “Be Thou My Vision” in the ceremony and I was struck by the closing words of the fourth verse…”Heart of my own heart, whatever befall, Still be my Vision, O Ruler of all.” Whatever befall…we are grateful God is present and we don’t have to walk this walk of life alone.