We haven’t heard anything from our friends, Justin and Victoria, today. Last night, for the first time in well over a year, saying good night to their little Moriah didn’t mean kissing her on the forehead, checking in with the nurse and heading home with the phone close at hand. Greeting their little girl this morning meant simply stumbling into the next room. MORIAH GOT TO GO HOME YESTERDAY!!!
As this week has had it’s share of tears, it feel so good to have happy ones rim my eyes as I type this. This is an unchosen journey, but we are buoyed by having met some incredible people on the way. As we’ve felt burdened by their struggles, we truly rejoice with them over such significant milestones.
It might seem appropriate to wish the Nelsons a peaceful weekend, but I’m inclined to pray for the opposite. I hope they have an exhausting one. Not the kind of ICU-exhaustion they might be accustomed to; but the kind that comes from having to read the same book seven times in a row…from taking long walks around the block to keep a little one occupied…from never-ending games of peek-a-boo behind the couch…from just plain being giddy over the goodness of God evident in the precious little girl before them.
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.
Well, I finally figured out/got around to posting the article that ran in last week’s Santa Barbara News-Press about Rudy. Needless to say, we’re still pretty tickled about it!
Grandma Jo got a taste of celebrity on her plane flight from SB to Denver. Her travel neighbor was going home after visiting her daughter in Santa Barbara and when it came up in conversation that Grandma Jo was in SB visiting her daughter’s family and grandson who has half a heart, the woman replied “is that the boy who was in the paper?!”. Ha Sadly, Grandma Jo returned home to Kansas on Wednesday. Rudy is missing his playmate. 🙂 He liked all of Gma’s songs and games. And, now, after a string of really big events, it’s back to the regular routine on the homefront and preparation for Rudy’s heart cath next Thursday. ‘Heading into another big season…
The activity continues this week at a fever pitch! Just when we feared things would calm down between the Birthday and the big Heart Walk this weekend, a story about Rudy was featured in Tuesday’s edition of the Santa Barbara News Press. We’re so proud and are working to get it linked or posted online for all of you Rudy fans to see.
An equally big highlight for me was the chance to meet some true heroes. I had an opportunity to attend a conference at Stanford and, while it’s always fun to go prowl my alma mater (even if the only students I know to look up are kids of people I went to school with!), I was most excited that it would give me a chance to finally meet the Nelsons. Over the course of Rudy’s journey, we’ve come into contact with many families facing similar circumstances–and a few of them become your friends.
If you read their blog, you will quickly get a sense of Justin and Victoria’s devotion to little Moriah. Recalling my chance to see it first-hand makes my eyes a bit moist; love, concern, wisdom, joy, celebration, faith, hope, beauty in such abundance. Moriah is adorable and her parents are such people of peace and grace having been thrust into one of the most challenging parenting scenarios conceivable. Over the last two years, we’ve received vivid reminders of just how much might be asked of us as parents, but that becomes so clear when I see parents who have relocated, quit jobs and altered their lives to an unbelievable extent on account of their child’s needs.
Among the graces extended to Rudy is the fact that he didn’t come when his parents were in their mid-twenties. I am in awe of Justin and Victoria and the way they have navigated this. With her third birthday approaching, Moriah still has yet to spend any significant stretch of time at home. But it’s getting very close and our prayers are with them–for Moriah’s health and for the mountain of logistics that need to be overcome with insurance, home health, etc. in order to get her there. What awesome people. What a great visit. I hope I’m not being to forward if I insist on doing it at YOUR HOME next time! Be sure to check out their blog and pray with us.
Justin, Victoria and Moriah proudly displaying their Rudy swag!
Devoted Rudy fans might have recalled yesterday’s significance…October 6th. Five days after his birthday. That unforgettable day two years ago when he had the Norwood (remember this and this). As much as this date is etched into memory it got a bit overshadowed yesterday when Olivia got home from school and discovered that her pet fish, Allen, had gone to the great fishbowl in the sky. As I was out of town, Max officiated at the memorial. He shared that Allen was a good fish and he made Olivia very happy during his short life. He gave unselfishly and asked nothing in return except for daily food and weekly changes of water (hindsight indicates that neglecting the latter may indeed be fatal). Olivia is doing well, buoyed by the prospect of getting a new fish after school today, but draws comfort from us all remembering Allen–there was no beta like him!
The docs told us several times that, due to what Rudy had to endure at the start of his life, he would have his own unique developmental time line. That’s certainly been the case. The milestones come slowly, but they do come.
About a month ago, we realized that sponge baths were getting kind of difficult. Due to his compromised health and this trache and G-tube being potential sites of infection, regular hygiene is a big deal (having a Mom who’s borderline OCD works in his favor here). We don’t have the biggest of kitchen counters to begin with and Rudy has become very good at grabbing for things and knocking them down. So bath time became a sort of juggling routine of trying to control his squirming, catching items (sponges, medical supplies, dish soap, the phone, the fruit bowl) before he knocked them over the edge, and then–oh, yeah–actually getting him clean.
So, now that he can sit up pretty well on his own, we finally decided to see if we could skip the sponge bath and put him in the sink. While we captured the first couple of times on video, we thought it would be cruel to post that as he HATED it. We suspect there was something about the new sensation that just wasn’t suiting him. But that’s where having a skilled in-home therapist at home sure is handy. Olivia loves taking care of her little brother and he clearly loves her attention. Check it out:
We’ve got a big bathing boy, who even likes to splash around in the tub! Astute Rudy fans might recall that this isn’t Rudy’s first foray into the bath…but look how far he’s come! Stay tuned…if he keeps growing this way we’ll have to transition him to the actual bathtub before too long!
Thanks everyone for your prayers. The antibiotics seem to have done their magic and, with the demise of ED and EFD, Rudy’s diapers are holding containment and the smells emanating from there are the usual kind.
We laid lower than usual for the past couple weeks, but as Rudy got his spunk back, we ventured out to have some fun. Down at Ventura Harbor on Saturday, Rudy was intrigued enough by the car ride to tolerate the din of the arcade:
Back home on Sunday, he felt up for taking his own set of wheels out for a spin. Check out that leg strength–Fred Flintstone’s got nothing on him. Not to mention that back and neck strength!
Cars are cool! Especially red convertibles. The same cannot be said for red trains:
Get me back in my car!!!
After all, you can’t sit behind the wheel of a train and hoot and holler. No girls can hear you…you need a convertible for that!
Thank you for all of the prayers and inquiries in the wake of our ER trip this weekend. Rudy is doing well and even has some bursts of energy and happy moods, but we’re generally staying close to home and going at a slow pace while the antibiotics do their work. Fortunately, the week has had a good dose of fun thanks to Oma and Opa’s visit and big sister’s birthday.
Even with our transparency on this blog, there are still some of the more private struggles that Trish and I have had to deal with that are embarrassing to share about. This week, we have been preoccupied with ED. One would think this would be an individual matter where the symptomatic individual can deal with the issue privately. But that’s not the way we approach things–for us, ED is a family issue. We all feel the burden of one person’s ED. As much as one might try to keep this private and personal, our whole family and even some of our friends have had to wrestle with ED and it’s implications. ED is a family condition and it’s pervaded our life this week.
That’s right, our family has been afflicted with Explosive Diarrhea (what did you think I was talking about?). That was the first symptom in the sequence of events that led us to the ER. Even if the first couple of times were just gross, the clarion report was impressive enough (not muffled in the least by a diaper) that instances of ED were greeted with delight by Rudy’s older siblings. Once it became evident that these episodes far exceeded the containment capabilities of modern diaper technology, the novelty wore off and a steady stream of laundry cycles began.
After returning from the ER, we thought that we might see changes for the better after the first few doses of medication took effect. Our observations were quite the opposite, such that we placed some follow up calls. These revealed that antibiotics not only exacerbate ED but actually add some new wrinkles as far as consistency. So now our struggle is with EFD. Explosive. Foaming. Diarrhea. Picture the worst, then welcome to our world. We only hope the antibiotics run their course soon…for Rudy’s sake and ours! The good news is we have plenty of crib bedding, detergent and diapers in good supply. The bad news is the garbage men just may plain refuse to pick up our cans this week. So sorry Allied Waste Management!
Perhaps it’s too late to do anything about the visual images this post has put into the reader’s mind thusfar, but let me attempt to do so by documenting some of the happy distractions that carried us through. We had a fun visit with Oma and Opa (and much appreciated the help in moving sets of bedding through the laundry). And today Rudy’s big sister turns eight, so we’ve been celebrating that most of the week.
Check out Rudy's cutting edge hairstyle!Fun with Oma and Opa
Rudy having fun with our big birthday girl!
Livy's birthday dinner. Why no Rudy? A spectacular EFD episode sent he and Daddy sprinting to the car.
A three-day weekend with beautiful weather is always welcome. Even better when it includes visiting grandparents and the start of Max’s football season (go Goleta Chargers!). Yet we’ve been preoccupied with our little Rudy. He stools started to get loose on Friday morning (all kids get that–it’s probably nothing, right?) He started to get a little fussy later in the day (what baby doesn’t occasionally do that–it’s probably nothing, right?). More diarrhea and lethargy all day Saturday led us to consult with UCLA (who use bigger words to speculate that it’s probably nothing, right?). Today brought a low-grade fever and a pretty unhappy boy (please tell us it’s nothing). We’ve been on the phone with different folks over the last couple hours (it always happens on weekends), and since I’ve started typing this, we’ve gotten the recommendation from UCLA to head to the ER to have Rudy checked out (it’s probably nothing, right).
As we’ve learned from watching others, little bugs can be a big deal to little heart warriors. Please pray–we’ll keep you posted.
s, it feel so good to have happy ones rim my eyes as I type this. This is an unchosen journey, but we are buoyed by having met some incredible people on the way. As we’ve felt burdened by their struggles, we truly rejoice with them over such significant milestones.
Rudy's Beat 