Well, we’ve made it to Day 3 of the 2012-13 School Year! Ha Ha The big sibs all headed back on Monday at the start of what’s turning out to be the hottest week of our summer – that’s just wrong! 🙂 All are coming home pretty wiped at the end of the day but generally pleased with their teachers and classes. Rudy has been a little lost with everyone gone during the day. On Monday he periodically headed down the quiet hallway knocking on each of the kids’ bedroom doors in search of a playmate – too sweet!
Rudy’s new teacher paid us a home visit yesterday to get acquainted before school starts for his class on Tuesday. Teacher Diane is sweet and will be a fun addition to the Bear Club family. I was informed yesterday that he’ll also have a new nurse so we hope to meet her before Tuesday as well…lots of adjustments ahead for Rudy next week so we’ll take it slow if need be.
We’re looking forward to another great year for Rudy and the big kids. I’m praying specifically that this will be a stable year for Rudy physically and that the underlying anxieties in our household regarding Rudy will be outweighed for the big sibs with a strong sense of encouragement, affirmation and hope throughout their long days away from home.
Well, there is no stopping it…summer 2012 is coming to an abrupt end and the full schedule of work, school, therapy, fall sports, doctor appts, etc starts bright and early Monday morning. The big boys have already gone to their school orientations/check-ins to turn in paperwork, get school pics taken, pick up class schedules and school IDs (this week feels VERY productive). Olivia finds out her class placement tomorrow (Friday) and Rudy is enrolled and ready to start school at the Bear Club on September 4th. As always, I’m sad to see summer end but I know we’ll all enjoy getting back into a structured routine once we adjust to all the changes this season brings.
Rolf and I had hoped to take our family on a summer vacation up the coast for a week or so this year but between Wilson’s packed summer schedule and other conflicts our big plans got whittled down to a long weekend getaway this past weekend. It was short but sweet and a nice family memory maker nonetheless. Our trip included a very special visit with one of Rudy’s heart buddies for whom many of you have prayed…Moriah and Rudy had their first face to face, dare I say, “date”!!! The big kids came dutifully along ready to patiently endure a visit with “Mom and Dad’s Friends” until they discovered how hip and cool Justin and Victoria are. Come to think of it, we realized on the drive home that J & V are actually closer in age to our kids than they are to us, so we’re glad all the young kids tolerated us old-timers being around (sigh). But what an inspiration to be around another family that sets such an example of how to walk through life with a medically fragile child. We LOVE you, Nelsons, and feel even more connected after getting a chance to hug tight and share common struggles and joys.
The big kids also had a chance to connect with old friends Emmy and Steve-0 (who they haven’t seen in a few of years)…they are significant to Rudy’s story as their family was visiting Santa Barbara the week we got Rudy’s diagnosis in August of 2008…a sweet comfort during that most scattered and frightening week.
Sadly, another member of Rudy’s team is moving on and we had to say “goodbye” to OT Julie last week. We will miss our “snack” dates with Julie during Rudy’s oral therapy each week but we wish her well and are grateful for her investment in Rudy this past year.
No word, yet, on decannulation from the cardiologists down south so we’re still waiting to schedule that procedure with Dr. Nina…the cycle of routine “specialist appts” starts next week for Rudy so he’ll be seeing a variety of docs the next couple of weeks including Dr. Harake again. Hopefully he’ll know something by then if not before. In the meantime, we’ll go ahead and focus on school and upcoming fall events like the Heart Walk…be sure to let us know if you’d like to join us for the walk. There is still plenty of time to make a donation if you’d like...here’s more information.
Thank you! I’m keenly aware today of the many things we have for which to be grateful.
I haven’t wanted to publish an update this past week and bury our post about the Heart Walk so, in case you haven’t checked-in in a while, will you please take some time to read this post and join our fundraising effort for the American Heart Association? 🙂 We are so grateful for the swift and generous response from many already!
Rudy is back to his energetic self after his heart cath and our family is back to it’s fast-paced slew of activities after laying low for a few days. Rolf, Max, Olivia, Rudy and I drove down to L.A. on Thursday to pick up Wilson at LAX upon his return from Costa Rica. It’s good to have him home and we look forward to hearing more about his first foreign missions experience as he rests up and settles in!
Rudy had a follow-up appointment with Dr. Harake this week. It was a quick stop…no echo…just a quick check of Rudy’s vitals and O2 sats. Dr. Harake wanted to make sure Rudy tolerated the 5-hr heart cath procedure okay and we spent most of the time talking a little more in detail about the cath results. As we reported after our consult with Dr. Dan, Rudy is still not a clear-cut Glenn candidate so there is no plan for any treatment to his heart at this time. If there is a move toward the Glenn, then there will most likely be a need to coil more collaterals before surgery. One of the problems with coiling collaterals is that, over time, new collaterals grow to replace those that were shut down–a losing battle in many patients and especially in Rudy’s case where the scarring from the pleurodesis he needed creates an even more fertile field for them to multiply. Most of Rudy’s collaterals are growing off of the subclavian artery so Drs. Harake and Dan are considering a future heart cath where they will line the inside of the subclavian arterty with stents to literally block any more collaterals from growing. ‘Makes sense to us so we’ll revisit that idea when the next cath date comes around.
Dr. Harake also took the time to explain to us what Dr. Dan meant by a “modified Glenn” during our consult with him after the cath. (Recorded here as best as we understand it…) In a normal functioning body, the oxygen-poor blood from the upper part of the body flows into the superior vena cava which takes it to the right side of the heart to get pumped into the lungs to get oxygenated. Once oxygenated, the blood travels to the left side of the heart to be pumped to the body. In a HLHS heart, the circulation of the blood needs to be rerouted so that the RIGHT side of the heart pumps the newly oxygenated blood to the body. A classic Glenn surgery is defined by disconnecting the superior vena cava from the heart and redirecting it to the right pulmonary artery so the “blue” blood drains directly into the right lung to get oxygenated. Nowadays, a Glenn is usually bi-directional meaning the SVC is still severed from the heart but is attached to the pulmonary arteries in such a way that it flows to both lungs. The modified Glenn that Dr. Dan is talking about is a classic Glenn that attaches the SVC to Rudy’s left pulmonary artery sending the blue blood to Rudy’s GOOD lung specifically as his right lung is the one most compromised. Dr. Harake doesn’t seem as convinced a modified Glenn would be necessary… he feels the blood would naturally drain to the better lung in a bi-directional Glenn because there would be less pressure resistance. It’s helpful to have a better understanding of it all but, of course, it’s all talk about a hypothetical scenario at this point so we’re not spending too much mental energy on it. Rudy needs to be a good candidate for surgery regardless of which direction the team takes in surgery so we’ll just cross that bridge when/if we come to it. We are just so grateful for the amount of physical, mental and creative energy Drs. Dan and Harake are putting into Rudy. We are blessed to have such skillful and competent docs who have a good balance between focusing on the needs of today while thinking through potential options for the future.
So, our next step is to wait for Dr. Harake to consult with the rest of Rudy’s team at UCLA. If the they decide not to schedule any procedures in the next 12 months or so then I’ll call Dr. Nina’s scheduler and get Rudy a date in the OR for decannulation! Because Dr. Woo (pulmonologist) and Dr. Nina (ENT) have both given their consent to pull Rudy’s trach, the final call lies with the cardiologists. Other than that, we wait and get ready for school, of course! 🙂 The big kids head back on August 27th and Rudy starts on September 4th…summer is winding down far too fast. We’re definitely going to make the most of our last two weeks of summer vacation so stay tuned! Ha Ha 🙂
As planned, we have been laying low since our return from UCLA. We ventured out briefly a couple of times on Friday to “get the stink blown off us”, as my grandma used to say, but Rudy is definitely still sore and uncomfortable and needing a dose of Tylenol every 4 hours.
In addition to the sensitive spot on his groin where they gained access to his heart for the cath, Drs Dan and Harake took advantage of Rudy being under anesthesia and worked on Rudy’s chest wound for us…for over 3 years, we’ve been treating Rudy’s chest scar from his open heart surgery that never fully healed due to some pesky sutures that didn’t dissolve or recede. Assuming we’d be heading back to surgery at some point, we figured Rudy’s surgeon could deal with it then but it became increasingly worse over the years and a growing concern for us. Pulling sutures is not a typical practice in the cath lab so we are particularly grateful for Dr. Dan’s willingness to address our concern and take care of it once and for all. It took some pulling, digging and squeezing that, I’m sure, is contributing to Rudy’s post-procedure discomfort but it looks a TON better already and is quickly healing! Yippy!
Now that the cath is behind us and with just 3 weeks of summer vacation left, it’s time to look ahead and begin to prepare for the fun events that already fill our fall calendar…events like Olivia’s 10th birthday, the Santa Barbara Rescue Mission’s annual fundraising Bayou event and Rudy’s 4th birthday!!
It has become a bit of a tradition for our family to celebrate Rudy’s birthday by participating in the annual Santa Barbara Heart Walk benefitting the American Heart Association. This year the Heart Walk will take place on Saturday September 29 (just 2 days before Rudy’s 4th birthday on October 1st) and, once again, we look forward to join the hundreds of other participants who will walk and raise money in honor or memory of a loved one affected by heart disease and like last year, the money raised by “Team Rudy” will go directly to PEDIATRIC research and programs. An investment that could potentially introduce new treatment options that are not available to Rudy and kids like him today. In 2010, Team Rudy raised $10,275 and in 2011 we raised $10,486 – an extraordinary response from the larger community of Rudy supporters from as far away as Germany! We are deeply grateful for the gifts given in honor of Rudy the past two years and invite you to join us in this special campaign again this year. We certainly don’t want to take advantage of our friends’ past generosity and don’t want anyone to feel pressured to give but if this is a cause you feel you could support, would you consider donating today or joining “Team Rudy” to fundraise and walk alongside us? To visit our family’s personal donation page, follow this link OR these simple steps:
1. Go to “www.sbheartwalk.com”
2. Click “Donate” on the Home Page
3. Enter Rolf’s name: First name “Rolf”, Last name “Geyling” and click “Search”
4. Follow the instructions to click on our family’s name and you’re there!!
*Also, Olivia asked to manage her own fundraising this year so you are welcome to make your donation on her page as well…you can follow this link to get there or follow the instructions above inserting Olivia’s name. 🙂
We sure hope you can be a part of this special event…either by giving or participating! Although Rudy’s future remains complicated and uncertain, we are encouraged by his progress and inspired by his friendly and happy spirit…grateful to “give back” any way we can.
Since we’re on the subject of fundraising, I thought you might also be interested to know that since I launched my fundraising efforts for Camp del Corazon through the sale of my “Rudy’s Heart” pendant in February of 2010, we’ve been blessed to donate $1500.00 dollars to the camp! That’s a lot of Rudy’s Hearts! 🙂 A big thank you to those who have purchased a Rudy’s Heart pendant or given directly to Camp del Corazon in honor of Rudy. This is a summer camp experience we pray Rudy will get to enjoy when he’s old enough led by a group of caregivers and medical professionals we love very much. We hope you take some time to read up on their very special work.
Thank you all for your prayers this past week and for walking alongside us in so many more ways than just one! Love and hugs from all the Geylings!!
Rudy had a decent night…he was a little restless with some pain that could be managed with Tylenol so he actually got some good stretches of sleep in between Tylenol doses. Rolf and I took turns at Rudy’s bedside and were mildly annoyed by the IV saline pump that kept alarming for some reason…if it weren’t for the pump, it would have been a pretty quiet night. Ha Ha
It’s 10:45am and we’re just waiting for Dr. Dan to review this morning’s echo and then we’ll be cleared to go! Not bad!!
In general, Drs Dan and Harake accomplished what they wanted to do yesterday in the cath lab. Rudy’s procedure lasted 5 hours and our dream team worked hard during that time to coil a “bunch” of collaterals. Rudy’s circulation is inefficient and so his body is adapting and growing new veins because it wants more oxygen. Rudy’s body is working hard to “fix itself” which is amazing but the problem is that these collateral veins are usually thinner and less organized. Frankly, it looks like a big chaotic web. It’s important for these veins to be “coiled” or tied off to prevent the blood from flowing all willy nilly…making it easier for the docs to control how and where Rudy’s blood flows. Control of Rudy’s blood flow and pressures is an important component to a successful Glenn.
Rudy is still not a slam-dunk Glenn candidate but Dr. Dan feels like we may have an option to do an adapted Glenn surgery down the road but it would be risky…so we would still need to wait until the risk of NOT DOING surgery outweighs the risk of DOING surgery – the same position we are in now. So, we’ll continue to wait and pray for a Glenn green light in the future.
We didn’t talk a whole lot about pulmonary artery pressures and Rudy’s pulmonary hypertension as that wasn’t their focus yesterday. Dr. Dan said he wouldn’t expect a huge change from the numbers they measured in March. The Sano shunt that they opened up with 2 stents last time looks good and Rudy’s diastolic pressure is low (which is good). The intricate details of what’s going on in Rudy’s heart and surrounding area is sobering to us but everyone remains upbeat and hopeful and so do we. Of course, time can really work against us as his heart continues to work hard and enlarge and as collaterals continue to grow, etc, etc but Rudy has lived longer and stronger than most on his team would have thought possible so we continue to trust that God is giving Rudy this extended time between the Norwood and Glenn to see lung growth and healing. He’s kind of stuck in a bit of a Catch-22 and so even though we fully understand that time can be our enemy, we also recognize it is our friend and thank God for each hour, day, week, month, year that passes by!!
Okay, we just got word we can leave! We’ll pick up the big kids and slowly make our way home up the coast – it’s a gorgeous day!! Thank you all for praying and texting…we are so grateful to you and so grateful for Rudy’s caregivers and cheerleaders here at UCLA! We are humbled!!
Got the call after 6pm and had the consult with the docs. Here’s Dr. Dan giving us the subclavian slideshow. More details will follow but in short: stable & steady progress. Probably no clear-cut plan for surgery at this point.
Just got to Rudy in Recovery. The woozy warrior greeted us with a smile. Thanks for praying for this amazing boy.
We’re in hour 3. Got a call from Nurse Flo in the Cath Lab at 2hrs and she reported that everything was going well and the docs were coiling collaterals. No guess as to how long they’ll take as Rudy’s got hundreds of them. They’ll keep calling with updates every 2 hrs or when they’re done.
We’re out here on the patio on a beautiful summer afternoon doing our best to minimize anxiety and adrenaline. From the looks of the text Bob just sent me, Livy and Max seem to be going out of their way to do just the opposite at the Santa Monica Pier.