We’ve been so busy this week with our family scattered in all directions that we failed to get an update posted but all are back under one roof again and we’re staying close to home today as another “weather system” is passing over the coast.
Grandma Jo flew in last week just in time to help us celebrate Max on his 12th birthday…a fun-filled afternoon with friends, food and bowling! Then it was time to pack up and send Rolf and Max off to Catalina Island early Monday morning for Max’s 6th grade outdoor/marine education school trip called CIMI (Catalina Island Marine Institute). It just so happened that this was also the final week of dress rehearsals for Wilson before his school’s production of “Bye, Bye Birdie” this weekend, Livy had a few afterschool practices for her upcoming school performances and sprinkled in between all the shuttling to and fro, Rudy had a couple of doctor appointments. Grandma held down the fort keeping busy with the laundry and ironing and banked quite a few “Rudy hours”. Rolf and Max had a safe and fun week, the school musical was a smash hit and Wilson’s performance as an enthusiastic 1950s teenager was “spot on” and I’m starting the week off with all my laundry caught up so it has been a good week all around. 🙂 Ha
And then there is Rudy…happy, as long as somebody is paying attention to him and very happy now that he received the last of his synagis injections for the winter – brutal simultaneous injections in both thighs!! Our monthly cardio-appt with Dr. Harake showed no change in his heart status so we continue to wait…things are stable enough to wait 6 weeks (instead of 4) for our next appt. In the meantime we’ll focus on Rudy’s next sleep study and making progress with decannulation. Unfortunately there has been a delay in getting the sleep study scheduled at Children’s LA but we have the approval to move forward so hopefully we’ll get that on the calendar soon. I’m in no hurry, though…with spring break coming up in a week, I’m eager to have a fun, relaxed week with all the kids at home. 🙂
Grandma Jo will head home on Tuesday and life will settle back into a normal rythym after all the extra-special activities of the past couple of weeks…but, of course, “normal” doesn’t mean uneventful in this family so stay tuned! Ha Ha
Happy 12th Birthday Max!!! 3-10-11Rudy got to go to the dress rehearsal since he doesn't tolerate large crowds OR applause! He liked the music!!
Wilson’s official “head shot”…these Jr. High productions are becoming quite sophisticated…
"Break a leg Wil"
Wild CIMI fun…
"DON'T break a leg Max!"Super Parent Chaperone!
Olivia’s rainy day pasttime…
Max joined in the fun...Rudy's no dummy...he stayed indoors and played ball with Grandma!Catch!
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!!
We Love You!!! Happy Valentine's Day!
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!
‘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:
Cuteness!Livy woke up bewildered from the flash and Rudy saw that as a window to make like a bed hog.Kinda hard to stay mad at the little half-heart 😉
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:
In this “post cath” season of uncertainty and life in limbo, I mistakingly thought things would slow down a bit in regards to Rudy’s care. Although we’re not heading into the intensity of heart surgery and a long hospital recovery, life has definitely revved up for us with the multi-step process and logistics of weaning Rudy off the trach – a process known as “decannulation”. Last week’s procedure to remove scar tissue in Rudy’s airway was the first step. We made it home late Wednesday night and it took a few days for us to settle back in and catch up on stuff at home. Rudy was feeling and acting like himself by Monday and we’ve had a good week so far.
Waiting for discharge 11-10-10
The next step in the process is a sleep study and we are blessed to already have it scheduled at Children’s Hospital LA (UCLA doesn’t have a pediatric sleep lab in which to conduct the study) Sunday November 28 – Monday November 29!! This is sooner than we expected so we’re pleased. In preparation for the sleep study, Dr. Shapiro (UCLA ENT) gave us a cap for Rudy’s trach so he can practice breathing completely through his mouth/nose. Because Rudy has been doing so well with the speaking valve (which allows him to inhale through the trach but forces him to exhale through his mouth) the adjustment to being capped has been a smooth one. What’s not been so smooth, as we predicted, is the switch to the nasal cannula. Boy, he is quick to get his fingers underneath the cannula and pull it off!! When he is capped and, ultimately, when the trach is pulled, he will need to get his oxygen through his nose. A little bittersweet for me because I’ve LOVED having his face free of tubes and tape since he got the trach in February 2009. When he came back from the OR that day, I remember how my heart jumped when I saw his face “tube-free” for the first time since he was born. 🙂
The trick to making the nasal cannula adjustment, we’re finding, is DISTRACTION which is where the big kids come in. Rudy’s sprints with the cap have involved high energy activity with alot of attention from the big sibs (see video below) – good for the body and soul!!! 🙂 So, we will continue with the practice sprints here at home, get signed off at the sleep study and then head back down to UCLA for a couple of days of observation when Dr. Shapiro actually pulls the trach (do we dare hope before Christmas?!). We expect Rudy will do great whenever it happens!
Emotionally, we’re still processing the “big picture” scenario…experiencing the pain & confusion & anxiety in waves…we have our good days and our bad days like with anything else, I guess. I’m grieving what feels like a set back but also acknowleging there is alot that is “unseen” in God’s plan for Rudy and the rest of us. ‘Just trying to remember to breathe sometimes with everything else going on…:) Thank you for your prayers dear friends!!! There is so much my heart is experiencing that I can’t even put into words…the assurance that God understands all that is going on in and around me is of great comfort.
Settled down with Dad...t.v. can also be a helpful distraction!Hey, Big Boy!There's a smile!
There is so much that went on this past week and I’ve been having a hard time figuring out how to report on it all…some things having to do with Rudy and his care, some things having to do with the life of our family and SO MANY things we are still processing in our minds and hearts. In some ways I feel like we’ve been darting all over the map both physically and emotionally and then it dawned on me yesterday that there is an emerging common thread of “God’s grace” evident in all that is going on and suddenly it all feels very much connected and intertwined!
I think the shock of Rudy’s cath results is starting to subside and the heaviness is settling in…Rolf and I are both having a hard time focusing during the day and daily tasks are taking twice the amount of energy and time to accomplish. Nights are the worst…the hours between 2 and 4am are especially bewitching and restless sleep is the norm these days. My week last week culminated with the need for a root canal which added to the feeling of agony and heartache (not to mention toothache!). And, yet, in the midst of the “pit in my stomach” pain and uncertainty, there is an undeniable, deep-rooted peace. It’s a curious experience…pain and peace coexisting equally in the very same moment. Our good friend Bob describes it as the “miracle of God’s presence” and I have to agree. God’s presence brings with it peace and His sovereignty brings hope and the two are powerful antidotes for fear and despair. The feelings of sadness are very real and yet the penetrating peace and hope of God are just as real and bring comfort to a mother’s (and father’s and sibling’s) tender heart…ah, God’s grace!
The miracle of God’s presence was also demonstrated about 3 weeks ago when a sweet, young family visited our church for the first time. We bonded quickly with this family and found out as we visited after the service that they lost their 4 year old daughter a year ago November. Joele’s condition was different than Rudy’s but she had similar equipment and so the connection took on even more depth. A week later we shared common stories of frustration with insurance battles and medical supply mishaps when the subject of wheelchairs came up…when we shared about our current battle to get Rudy a comfortable and appropriate wheelchair or medical stroller, Kara’s face lit up and with tears in her eyes she explained how she had been praying for direction about whom to pass on their daughter’s medical stroller and believed Rudy was the one. Long story short, I picked up the device the day before Rudy’s cath to try it out for the weekend and it couldn’t have been a more perfect fit! The minute I put Rudy in it he kicked his feet in excitement and clearly felt like a big boy sitting up high and supported in the middle of whatever’s going on. The generosity of Jeff and Kara in the wake of their own deep loss is profoundly moving to us…ah, God’s grace!
Thank You dear new friends!
(For those of you who inquired about contributing toward Rudy’s wheelchair, we are now transferring our monies and energy toward the purchase of a modified van to accommodate Rudy’s new device. Please know your gifts will be used toward this purchase and benefit both Rudy and our family as we settle into this next phase of Rudy’s mobility!)
After the draining week we had last week, I wasn’t too excited about the full weekend we had ahead of us but “duty” soon turned to “joy” when I realized that the weekend was full of events that represented my big kids’ passions…Wilson’s first drumline performance in the GVJH marching band, Max’s football season finale and Olivia’s ability to combine creativity and fun as she prepared for Halloween. Just a few days earlier Dr. Rick encouraged us to “not worry about Rudy and love all our kids” and here we had a weekend filled with “out of the ordinary fun” that helped me grow in my love and appreciation for our kids, their interests and their heart. This weekend was a helpful reminder that the lives of our older kids are active and colorful and rich and should be freely celebrated with gratitude and love…ah, God’s grace!
Tenor-man Wilson!Max's cheering section at the last game of the season! It was a tough season, Max, but we are so proud you played hard to the finish and didn't give up!Halloween Fun with Wilson the Wizard, Max the Miner, Olivia the Red M&M and Rudy the Lion!
Looking ahead, Rudy has two more doctor appointments this week and by the end of Friday, we will have touched base with all of his specialists and updated everyone. So far, no one wants to make any major changes in Rudy’s treatment. I spoke with Dr. Shapiro (UCLA ENT) late last week and she agrees with Dr. Pornchai that our next move should be to wean Rudy from the trach. She feels the scar tissue detected in Rudy’s airway during his bronchoscopy in July could likely prevent him from having a successful sleep test off the trach so she wants to remove that scar tissue before his sleep study. We scheduled that procedure for next Tuesday (November 9th) . Rudy will need to stay the night for observation and we’ll return home on Wednesday if there aren’t any complications. Once he heals, we’ll do the sleep study (hopefully in the next couple of months) and then start weaning him off the trach maybe at the start of the new year. Under different circumstances this would be a real exciting milestone to conquer but, I admit, my heart is heavy over it knowing the only reason we’re moving forward on this is because the Glenn isn’t happening…oh, for more of God’s grace!
Other than that, Rudy is happy, active and none-the-wiser! He thought Halloween was pretty cool but thinks Wilson’s drum set from school is even cooler…
As Trish shared in the last post, we’ve spent this weekend absorbing the news from the cath last week. I’d have to say we’re feeling our way through things so far as we’re not really at the stage of thinking or planning our way from here–we’ll get there–some realities take awhile to sink in. In the year and a half since Rudy’s been at home with us, the Glenn has loomed as a monolithic milestone–a scary but necessary rite of passage; the next step in prolonging Rudy’s life…and now it’s not there. So much of Rudy’s journey has been one of uncharted waters–unique complications and prolonged treatments, but having one of the fundamental interventions taken off the table feels like something of a different magnitude. We’ll likely get to the point of cogent thinking at some point and will update then, but for now it’s the feelings.
On that front, it’s been a quiet weekend with enough activity to keep us occupied. The feelings are there–sometimes it’s a heaviness, other times irritability, sadness and confusion. Thanks for kinds words, space, company and normal routines all in good measure.
Within all of this, there is gratitude–first and foremost just for who Rudy is–how many minor miracles must there have been to sustain him through this? We’re grateful for our big kids and there handling of this; some of the most poignant moments this weekend came during unexpected exchanges where they grappled with the reality of Rudy’s condition.
On the subject of gratitude, a helpful distraction for me this weekend was my 25th high school reunion. Unfortunately, it was in New Jersey so I couldn’t make the trip to be with the rest of the class of 1985, but I did send this little video greeting. Based on the feedback I’ve gotten, it probably left a more favorable impression of me than had I actually been there in person ;-). Amidst daunting circumstances, the chance to reflect on the journey that brought me here and for the richness of life and experiences fills me with gratitude. I missed seeing all of you Madison Dodgers! For the rest of you, hope you enjoy it.
We set the appointment for Rudy’s next heart cath early in the summer. October 21st was such a long way away. Now it’s almost here–and with it a good dose of anxiety. Back in January, his last cath showed that he was “not a good candidate” (read he wouldn’t survive) the Glenn surgery that his heart needs. The pressures in his lungs were too high (pulmonary hypertension) and they weren’t fully oxygenating his blood. The team was hoping that there would be enough time (at least 2-3 months) for two medications to address the hypertension and to overcome his lung damage. As we’re always on the lookout for the little miracles along this journey, we recognize one in that his little half-heart has kept right on chugging along to give far more time for all this to work…if it’s going to.
So the challenge lies in not letting our minds get swept up in all of the possible scenarios. What if the medications didn’t work? What if the lung function hasn’t improved? What if they find something else? What if they decide it’s time to do the surgery? You don’t want to prepare yourself for the worst; but hoping for the best seems risky given the potential of a let down. When we look at Rudy and the way he’s developing, we really want to assume things are favorable, but heart kids are tough to read and Rudy has proven to be unique beyond that. Until we get good data from the cath, we just won’t know. So, we get sleep when it comes and try to keep our minds from wandering farther than they already do. We’ll have the information soon enough.
We’d appreciate your prayers for Thursday. We’ve got a 6AM call time at UCLA, so we’ll roll out of SB at four. If they do any interventions (angioplasty or coiling collateral veins), we’ll have to stay the night. This is what we’re preparing for as his last two echos might indicate a narrowing of the aorta that may need to be opened up. If they don’t see anything to address, we may be able to get out by the afternoon. We’d appreciate your prayers for a good outcome: 1) for those lung pressures to be nice and low so Rudy would be able to handle the Glenn circulation, 2) for the blood to be fully oxygenated as it’s leaving the lungs and 3) for Rudy’s comfort and safety during the whole process.
Request #3 is especially poignant to us due to his development over the last year. He is so much more active and so much more aware of his surroundings. During his extended ICU stay and most of his follow-up procedures, he was relatively passive and calm. But that isn’t the case now, as evidenced by our ECHO appointment with Dr. Harake this week.
Sure, he looks very cooperative...
But then he got pretty feisty. I think the paper on the table makes cool noises. Given that an echocardiogram is supposed to give somewhat detailed and precise measurements of the heart, I marvel at how Dr. Harake accomplished this. I wasn’t able to video any of the actual test because I had to hold Rudy down (picture calf roping at the rodeo and you’ll get the idea).
Praying that this spunk will carry him through. Thanks for walking with us. We’ll post updates Thursday as we have them.
Rudy's Beat 