Everything went well. Waiting on a room assignment.
Rolling in
Chipper for the 4am wakeup and the drive to LA. Tinkled the ivories a bit in pre-op and then the journey to the happy place started with some Versed. The team just rolled him away.
Prepping for UCLA and Remembering Nina
It’s back to UCLA tomorrow to downsize the trach. We’ve got a 7am check-in for what should be a quick procedure at 9am. Everything should be pretty straightforward in the OR, but the team will want to monitor him for at least 24 hours in the ICU afterward to make sure everything looks right. It’s been awhile since I did a hospital shift, so I’m giving Trish a break and going to camp out with Rudy.
While any trip to the hospital with Rudy raises our anxiety and concern, it all pales in comparison with the news we got that little Nina went to heaven this morning. Once again we’re reminded that parenting can contain agony in far too many flavors. There’s nothing that can be said to bring Nina’s suffering into perspective, but I am so grateful that in her six years she was on the receiving end of such attentive and passionate love. We marvel at the courage parents like Todd and Rosy are able to muster in such heartbreaking circumstances.
Peace, comfort and grace. Updates tomorrow when we have something to report.
Praying for Nina
For the past few weeks, another family here in town has occupied our thoughts and prayers. We ask that you join us in praying for God’s grace, comfort and mercy during an unspeakably difficult time:
http://prayingfornina.blogspot.com/
We love you, Todd, Rosy, Teddy and Nina.
Happy Valentine’s Day 2011
On this special “day of love”, we send OUR love to all of you – our dear family and friends who are sharing this journey with us!! Rudy’s life could be defined by his heart defect and limitations but those who know him personally or through Rudy’s Beat know that truly his life is defined by LOVE! How deeply blessed Rudy is to have you in his life…and we’re pretty doggone blessed to!!
As is tradition in our household, the singing of “Will You Be My Valentine?” was in full swing last night and this morning. You may recall when we introduced you to this little holiday diddy back in 2009. Well, the kids produced a remix for this year’s enjoyment!
ROCK ON!
Gettin’ Around
Well, here we are…another month has been torn off the calendar and we’re halfway through February already! Since our last post, we’ve had a couple of phone conversations with Drs. Tirakitsoontorn and Shapiro and a new, revised “trach plan” is in place. As it stands now, Rudy is scheduled for an overnight at UCLA on February 22nd. Dr. Shapiro will downsize Rudy to a 3.0 Shiley PED trach and keep him overnight for observation – making sure he tolerates the downsize okay. Once he safely adjusts, then we’ll schedule the repeat sleep study. Both Dr. T and Dr. S agree that the downsize will increase Rudy’s chances of passing the sleep study. We’ll see…
Rudy’s monthly cardiology appt was on Monday and nothing has changed. Dr. Harake predicts that we’ll spend the bulk of this year in “conservative follow-up”…there is no plan for a heart cath or any intervention at this point. He feels we should use this time to focus on decannulation (trach wean) and affirms our current plan with the docs at UCLA. So, unless something significant happens with his heart, no action will be taken.
Eventhough the logistics of Rudy’s direct medical care seem to be slowing down to a standstill, the “behind the scenes” details never lull. After getting denied a couple of times already, Rolf is working hard to get Rudy into the CCS (California Children’s Services) system. Because Rudy’s current therapy and nursing services through Regional Center will end when he turns 3 yrs old, we pray the resources of CCS will be available to him by then (October 1, 2011). Another big piece of the Rudy puzzle has to do with our most recent major family purchase…with Rudy now weighing in at over 33 pounds and still not close to walking, it became more apparent to us last fall that it was time to look into getting a medical-modified van – one that would accommodate his wheelchair. A church contact led us to a van in San Diego that seems to meet our need specifically. Since the medical modifications alone on these vans cost between $30,000-$50,000, we feel blessed to have found this van for $23,500.
We share the specifics because many of you have inquired how you can help us and, although we are reluctant to put it out there, helping us purchase this van is one very practical way. For those of you who might feel so led, our church has offered to receive gifts on our behalf to put toward the purchase of the van.
Those who would like to gift our family can send a check made out to:
“Coast Community Church” at 4973 Via Los Santos Road, Santa Barbara, CA 93111 Attn: Geyling Family Van
Rudy got a special Valentine this morning from Gwendolyn. Gwendolyn is a local girl battling SMA and we have been sharing in each other’s journey on our blogs (www.gwendolynstrong.com). We also share a night nurse and Nurse Evelyn delivered Gwendolyn’s sweet Valentine last night…precious! Thank you Gwendolyn…we think you’re pretty darn cute too!!!
“Downward” Progress
‘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!!
“Forward” Progress
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:
It Might Get Loud!
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!!
Preparing for Pulmonology
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:
Rudy's Beat 