Well, after months of preparation, the Heart Walk is just 3 days away and we’re all “a buzz” around here with final preparation details. It’s cold and unseasonably rainy in Santa Barbara today but the forecast for Saturday is clear skies, sunshine and mild temps! It should be a gorgeous day. So, for those of you who planned to donate and haven’t yet, now is the time to go online to make that donation (www.sbheartwalk.com). Once again, we’re blown away by your response. Our goal was to hit 10,000 and we’re very close. The total for Team Rudy as of today is $8, 961.00!!! Amazing!!! Thank you, thank you!!
For those of you who are planning to come to the walk, please shoot to arrive at the Fess Parker Doubletree Resort by 9:00am. We’ll set up a “Team Rudy” tent in the grassy area across the street from the Fess Parker rotunda and we’ll meet there at 9:30am to distribute “Team Rudy Balloons” so we can walk to the starting line together. The 5K walk starts at 10am. We will meet back at the tent after the walk at 11:30am to have cake and a little birthday celebration for Rudy so please feel free to come and enjoy the celebration even if you don’t plan to walk. Come dressed in “Rudy Blue” and ready to have some healthy fun!
I wish you all could join us…but know you’ll all be with us in spirit! There will be many on our hearts on Saturday including the dear heart friends we’ve lost since Rudy was born…we’ll walk not only in honor of Rudy but also in dear memory of friends including Katie Manning, Baby Angel, Logan Elliott, Josiah Wilson, Ethan Skidmore and Jadrian Glick. These little lives that impacted us deeply are not forgotten and remain a constant inspiration in our journey with Rudy.
So sorry to get you all excited about Rudy’s first day of school…he ended up not going today due to a bug he’s been fighting for several days. We thought maybe he’d conquer it by today but after a couple of days with a rash and runny nose, it finally hit his lungs and he’s a chunky monkey today. Poor boy. We were all amped up last night (Olivia even picked out a special outfit for him to wear to school) so it’s a bit of a let down but we’ll try again on Thursday. We’re starting out slow…just two days a week and he’ll eventually work his way up to 4 days a week. The plan is for me to go with him initially until the staff is trained and feels comfortable with his care and an extra aide is hired. Eventually he’ll ride the bus to school (which will be wonderful – the school is a bit far) but for now I’ll need to drive him as there are a number of safety precautions that need to be worked out before the district will transport him. It’s all in process still but it’s certainly okay to take it slow.
So, sit tight…the “first day of school” post is coming! Ha Ha Thanks for all the sweet messages wishing Rudy luck and a fun start to school. He’s going to really love it, I think. ‘Praying for clear lungs by Thursday. 🙂
In the meantime, we’ll continue to get his “school supplies” ready…
Rudy's "Bucket 'o Supplies" to keep in his classroom
I tried real hard to post “Part 2” of Rudy’s birthday last night before bed but, alas, I wasn’t successful! I kept falling asleep as I waited for photos to download! Ha Ha A full day it was but we managed to squeeze in some celebrating of Rudy along the way and he certainly felt the love from family and friends both near and far! For ten years, the Rescue Mission has held it’s annual Bayou benefit out at Dos Pueblos Ranch. It’s always a memorable event, but it was especially so three years ago when Rudy arrived early. As surreal as it might have felt to leave our newborn in the ICU at UCLA it was comforting to be among so many friends that have only become more dear to us through this journey. So to have the event fall on Rudy’s birthday this time around made for a very special day. Despite his apprehensions about crowds, Rudy did have fun going out to the Ranch to supervise the preparations.
The SBRM Auxiliary and their husbands took a break from setting up to sing "Happy Birthday" to Rudy! 🙂All set and ready to go!
All dressed up for the Round Up at the Ranch!
I have no idea what we were laughing about but it sure looks like it was funny! 🙂 I love pictures of people laughing!!
Rudy was more than happy to stay home with the big sibs. Night nurse Evelyn came to relieve Wilson of "Rudy duty" to do his feed and evening meds and Rudy was very happy to see Nurse Evelyn on his birthday! 🙂Yeeee Haaaaw! We bid and we won the teepee & cowboy accessories! We absolutely have no room for it (ha, ha, ha) but I don't care...it is too cute for words!Rudy's checking out his boots...
The Geyling Siblings October 2008Happy Birthday Rudy!!! October 1, 2011
In the midst of a non-stop day, there was one quiet moment at the start of the day that this mama will cherish always…normally Rolf does Rudy’s morning meds but yesterday I got them ready. I knelt down at Rudy’s crib to administer them through his g-tube and as my hands were busy with his g-tube extension, Rudy leaned over, gently kissed my upper arm and then looked up at me with the sweetest smile….capturing my heart yet again! My whole day yesterday was filled with thoughts of the day Rudy was born and how we didn’t dare look beyond the day that was before us for so long…and now, here we are, three years later with a big boy who can bottom-scoot his way to anywhere he wants to go, can communicate his feelings and wants, is full of joy and not intimidated to share his happiness and love to just about anyone he comes in contact with! His life is so rich…and so is ours. Thank you for adding to the richness of our lives!
Rudy had a follow-up appt. with Dr. Harake first thing yesterday morning. His first words to Rudy were “Here’s the brave one…impressing everyone at UCLA!”. We reveled in the post-cath glow a bit before he took a look at Rudy’s heart by way of an echo. Rudy was uncharacteristically “squirmy with attitude” (a.k.a. uncooperative) which Dr. Harake laughed off as payback. It took me singing a few rounds of “With Someone Like You” to get him to lie still for the echo! Ha Ha
It looks like the aorta (where they performed the angioplasty) is still narrow so Dr. Harake would like to see us again in 2-3 weeks (before he heads off to Peru on a goodwill trip). Since the angioplasty didn’t open the aorta enough, we may need to consider a stent. We’ll see…
Dr. Shapiro (UCLA ENT) called yesterday and we had a helpful phone consultation. Dr. Dan sent her the cath results and she called to congratulate Rudy (love her!!) and talk about a plan to decannulate. She agreed with me that it may be difficult to ever get an accurate sleep study out of Rudy since he is at the age where he will fight it (as he did this last attempt in May)! She said there are cases where she will go ahead and pull the trach without a sleep study. It’s a simple process…she’d want to perform a bronchoscopy in the OR first to make sure his airway is clear, pull the trach there in the OR and then monitor him in the hospital for a couple of days. We’d be very open to going ahead without the sleep study and expect he would do well weaning off the trach so the plan is to resume sprints during the day where we cap the trach (we did these in preparation for the sleep studies). We’ll cap him for a few weeks before consulting with Dr. Shapiro again and then go from there. I just sooo appreciate Dr. Shapiro and her initiation with me…so often it’s us tracking down the doctors and Dr. Shapiro has always been quick to follow-up with us whenever she’s received new information about Rudy – SO HELPFUL! 🙂 Our appreciation for Dr. Shapiro grew this week when we received this little handwritten bday greeting from her for Rudy – SO SWEET! Seriously, it’s the little things that speak volumes. Rudy is so blessed to have such a gifted team of caregivers both at UCLA and here in Santa Barbara!
Birthday Greetings from Dr. Nina 🙂
Okay, we’re off to therapy this morning…Have a wonderful day everyone!
So sorry for my delay in getting this posted today…I started writing it this morning and then got interrupted by an away Chargers football game. (We won, Go Chargers!) So, here’s my heart cath recap…
After a bit of a discharge delay and a stop at Target in Ventura, Rolf, Rudy and I rolled into Goleta a little after 5pm Friday evening. We greeted the big kids, got Rudy settled and I collapsed on the bed to “stretch my back” which turned into a 3 hour nap! I got up long enough to say “hi” to the kids again, sort and start a load of laundry (in preparation to climb Mt. Kilimanjaro again), shower and unpack at least one bag before I fell back asleep to a very solid night’s sleep! Rudy slept hard too and it was very difficult to wake him up early this (Sat.) morning to take him to yet another Dr. appt for…a flu shot! Poor thing…that’s a rude awakening for a Saturday morning under any circumstances! He took it like a little man and was happy that Wilson decided to tag along as Wilson can make even flu shots funny!
Funny Flu Shot
So we’re very happy to be home and although there is a good bit going on this weekend in our household, we’ll try to give Rudy the space to recuperate and rest up. Thank you ALL for your prayers and words of support and encouragement on the blog, FB and email…we read them all and felt so uplifted during our stay at UCLA. As we posted earlier, the results of Rudy’s cath are positive and we are encouraged. Here’s a more detailed explanation to the extent we understand…
Recap of Rudy’s Cath Results in layman’s terms:
Basically, the purpose of the cath was to take a more detailed look at the condition and function of the heart, determine the O2 saturation of Rudy’s blood coming out of his lungs, check to see if his pulmonary pressures (pulmonary hypertension) have lessened and do any necessary interventions (i.e. close anything off or open anything up).
You may recall that the results of Rudy’s last heart cath last October showed definitively that not only had the O2 sats coming out of the lungs not improved but his pulmonary hypertension was worse creating too much resistance for the blood to flow properly…a combination that would make it impossible for Rudy to survive the Glenn surgery (the next surgery to his heart) or a heart transplant. This was particularly disappointing because it appeared the pulmonary hypertension drug treatment he had been on for 6 months at that time (Tracleer and Revatio – aka Viagra) wasn’t making a difference. Because there were no other treatment options, nothing in Rudy’s treatment plan changed this year and, as a result, Rolf and I weren’t too optimistic going into this cath. We were just hoping that his condition wasn’t any worse so it was a bit of a shock (and somewhat surreal) to actually hear good news in our post-cath consultation meeting! Even Dr. Dan said it felt real good to finally report good news after a Rudy cath! We’re still in limbo but it’s a hopeful limbo.
In a healthy person, the O2 sats in the blood coming out of each lung is 100%. Last year the sats in Rudy’s blood coming out of the R. lung was 74% and out of the L. lung was 81%. In Thursdays test, Rudy’s O2 sats in the right were 89% and 96% (!) on the left (very close to normal on the left side!). This is significant because it is telling us that the ventilation part of the lung function is healing. The pressure in the lungs is still too high for Rudy to be a Glenn candidate but it’s better…meaning the process is heading in the right direction! The half-a-heart doesn’t look any bigger and is handling the craziness that is Rudy’s body. Bottom line: Rudy’s lungs are better and his half-heart is no worse. As far as the Sano Shunt that was put in Rudy’s heart during the Norwood procedure (1st heart surgery) goes, it is narrowing but still allowing blood to flow and there isn’t need at this point to discuss putting in a larger shunt.
Right now there are two things feeding blood to Rudy’s lungs…the Sano Shunt and collateral arteries that have mutated to create an alternative route of circulation between Rudy’s heart and lungs. This is not an efficient way to circulate the blood (the Glenn would provide more efficient circulation) but it’s working. Rudy’s body is adapting and making it’s own way and for now that’s okay. As long as his half-heart remains strong and doesn’t get enlarged and overworked, the way Rudy’s body is adapting could sustain him for years. Our prayer, though, is that he’ll continue to make progress and ultimately be a Glenn candidate. Drs. Dan and Harake saw the need to control the circulation a bit and performed a balloon angioplasty to open some things up and coiled a couple of collaterals to close other things off. I’m not sure if any of this makes sense but the most telling part of our consultation with Drs. Dan and Harake was their demeanor – we could tell they were pleased (dare I say “giddy”) and that spoke volumes to us.
So the plan now is to increase Rudy’s daily doses of Tracleer and Revatio and give it some more time. We have our first appointment with Rudy’s new UCLA pulmonologist, Dr. Woo, on October 10th which is great timing because she’ll have all this new cath information and we need to follow-up with Dr. Nina (UCLA ENT) to discuss the next step toward decannulation (wean from trach) as Dr. Dan is eager to see us make progress in this area. This will all come in time…now that the cath is behind us, we can focus on our final preparations for the the Rescue Mission’s big fundraising event “The Bayou” coming up next Saturday (Rudy’s Birthday!) and then the Heart Walk which is the following Saturday! Wow, lots coming up! In the midst of it all, we continue to praise God for His grace and ongoing work in Rudy. May He be glorified in every step of Rudy’s journey. 🙂
We’re back on track with Rudy’s heart cath after a call on Monday notifying us that our appointment was likely going to be cancelled and rescheduled for December(!) threw us into an emotional frenzy. After spending all weekend making the necessary arrangements to get Rudy to UCLA, we were terribly disappointed and then super relieved yesterday to get the call that Rudy was back on Thursday’s schedule! Phew!! It’s been a bit of a roller coaster this week but now we’re all set…Rudy is healthy and happy, the big kids are covered and I managed to conquer the mountain of laundry that occupied our bedroom floor, bed and then floor again for the past week! Now all we have to do is pack up and prepare to leave early in the morning. We’re not sure what time Rudy’s cath will be but Dr. Harake would like us to arrive at UCLA by 7am just in case there is a cancellation and they can fit Rudy in earlier. Thank you, in advance, for praying! We’re praying for Rudy’s safety, for his pulmonary pressure numbers to be significantly lower and anything else that would make Rudy a good candidate for the Glenn. 🙂
Our Rummage Sale was a grand success on Saturday…we sold alot of stuff, connected with a bunch of people in the neighborhood, spread the word about the Heart Walk and raised an additional $290.00! 🙂 Rudy was stationed in the front yard keeping an eye on all the activity and looking cute…
Nurse Gina dropped by to say "hello"!Reading a book with big brother Max...
Wilson spent a good bit of his weekend at marching band commitments. He sure is enjoying his place on the drum line and Rudy likes it when he brings his performance drum home from school…
Future Dos Pueblos drum liner!Mt. Kilimanjaro!
Thank you for the MANY ways you’ve shown your support in recent weeks…Heart Walk donations, Rummage Sale participation, prayers for the heart cath, etc…how every grateful we are!
Okay, so we heard word today that Rudy’s cath is scheduled for next Thursday (Sept. 22) at UCLA. I’m not sure what time we’ll need to report to admit but I do know he isn’t 1st on the list so we expect it will be a long day and they may want to observe him overnight – especially if they need to do some sort of intervention…we’ll plan accordingly. Logistically it’s a bit short notice but I’m relieved to have a date on the calendar and, I suppose, it’s much better to get it done and know what we’re dealing with sooner rather than later.
Please PRAY, PRAY, PRAY for Rudy’s health…they’ll cancel the cath if Rudy has a bug and he has been battling a mild cold since our trip to Chuck E. Cheese’s!!! We’re going to try our best to keep him quarantined at home between now and then…please pray for clear lungs, no fevers and overall strength going into the cath next week.
We have LOTS going on this weekend including our “Rummage for Rudy” Sale benefiting the American Heart Association. Come on over to our house between 8am-2pm (6250 Avenida Gorrion Ct) on Saturday (September 17th) if you’re local! We have alot of nifty goodies to offer – a big THANK YOU to all who have dropped things off for the sale! The AHA Santa Barbara Heart Walk is just 3 weeks away and all the money we make at the sale will be donated to the Heart Walk campaign. We are doing great with almost $6,000 already raised for “Team Rudy”! We are over 1/2 way to our team goal of $10,000. There is still time to make a donation! Feel free to visit the official website at:
3. type in my name (Trish Geyling) to find our family’s personal page and follow the prompts from there.
Thank you! This is ending up being a pretty crazy season and the cath always ends up being a big mental drain but it’s also another big reminder for our family why participating in the Heart Walk is so important…don’t forget to drop me an email (trish@silverbytrish.com) to let me know you’ll be joining us after the walk for birthday cake! We want to make sure we have enough cake and party favors! Ha Ha Ha
Ok, (deep breath), I think that’s it for now…..thank you dear friends and PRAYER WARRIORS!
Rudy continues to do double duty in therapy as he adjusts to his new therapy schedule three times a week at the CCS Clinic and finishes up his home-based therapy that he has received through the Regional Center twice a week since we brought him home from the hospital. We have so appreciated therapists Kris, Gwen and Jodee these past two+ years and will miss their presence in our home very much. We’re going to make the most of the last two weeks we have with them as Rudy will no longer be in their “official” care as of October 1st but they will always be a part of “Team Rudy”. 🙂 I think Rudy senses his time with the gals is winding down and decided he’d give them a little parting gift…an emerging skill that has been one of our therapy goals for a long time…
We’re still waiting for word from Dr. Harake’s office about Rudy’s heart cath date. It could be as early as next week so we’re eager to get confirmation on this and plan for the big kids accordingly. We’ll keep you posted as this will be another big trip down to UCLA for us.
I took Rudy to the Sears Portrait Studio recently for his annual portrait…I was studying the digital prints yesterday in preparation to place an order when I took a closer look at the image below…I happened to bring one of Rudy’s favorite books to the photo shoot and the photographer captured this pic of him as he flipped through the cardboard pages. He lingered on this page caught in the photo for a long time and when I zoomed in on the image, I was touched to read the title of the page “I am with you always” and to see the image of Jesus holding a little dark-haired boy! So sweet and such an encouraging image to hold on to. I have a strong feeling Rudy doesn’t need to read about that bible truth to know it’s validity…he knows that truth through experience for sure but what an amazing visual reminder of the spiritual truth for me today…may it be a sweet reminder for you too!
Our big girl turns 9 years old tomorrow…a special birthday as Olivia will be 9 on 9-09. 🙂 We enjoyed a celebration with a few friends at Chuck E. Cheese’s on Sunday…a special treat for a special birthday. Rudy and the big boys joined in the celebration too. We were, of course, concerned that Rudy would not tolerate the noise and crowds at Chuck E. Cheese’s on a Sunday afternoon but we really wanted him to be a part of celebrating Olivia so we decided to give it a try. Rudy was definitely cautious most of the time and not too sure about Chuck E. Cheese when he met him up close and personal but he held it together (except for one meltdown during the high-octane stage show) and his presence helped to make Olivia’s celebration so special.
A turn on the Merry-Go-Round with the bday girl...A guarded Rudy meets Chuck E. Cheese for the first time...Keeping a close eye on the big rat...
Rudy even braved a couple of rides…I brought a tub of Clorox disinfectant wipes and got a handful of cross-eyed stares from onlookers as I tried to nonchalantly wipe down every inch of surface within Rudy’s reach. My efforts may be proving futile as Rudy came down with a cough, sneezes and a runny nose yesterday. Oh well, I think Rudy would agree it’s a small price to pay for the fun of new experiences like this ride with Wilson…
Rudy fell fast asleep on the ride home in my quiet car while the big boys listened to their ipods…Rolf, on the other hand, drove Olivia and her party guests home. Wow, and we thought Chuck E Cheese’s was loud! Oh, did I mention the closest CEC is about an hour from our house? Yep, that’s right, 60 minutes of this…ha, ha, ha
Olivia asked to celebrate her bday at Chuck E. Cheese’s many times over the years and when I asked her if the experience lived up to her expectations, she replied “It was better!”. Yea! You sure are fun to celebrate Olivia and you sure are a special part of our family. Happy Birthday Precious Girl!!!
Homework started this week for the big sibs and Rudy started his PT and OT therapy at the CCS (California Children’s Services) Clinic yesterday so our official fall schedule is underway. There will be some additional tweaking in Rudy’s schedule in October when he turns three, graduates from the Regional Center’s Early Start Program, possibly starts preschool and we finalize his CCS therapy sessions but, for now, Rudy’s schedule is plenty full and all 4 kids are diligent workers in school, therapy and all their various fall activities.
The kids wrote a song for Rudy during our getaway to Morro Bay and it has fast become a family favorite…songwriting tip #1: when in doubt, use the word “awesome”! 🙂
Bless his heart, Rudy barely napped all summer and I thought it was because he was outgrowing the need for a daily nap (all my kids stopped napping at 2 yrs!) but as it turns out, he just didn’t want to miss out on any of the sibling fun because once the big sibs went back to school, Rudy hasn’t missed a day! Ha Ha
Rudy may be getting big but he's not too big for an afternoon nap! 🙂
Heart Walk Update:
A BIG thank you to those who contributed to the Heart Walk so far. We’re almost at 50% with a month to go-Amazing! The kids planned a while ago to have a rummage sale to raise money for the Heart Walk and we’ve decided to have it on Saturday September 17th. Local friends, if you feel the desire to clean out a closet or two, we will gladly accept any donations for the sale between now and the 16th! 🙂 Thanks everybody!
Rudy's Beat 