With Labor Day behind us, the fall schedule is definitely in full swing and it was Rudy’s turn to head off to his first day of school today.

Rudy’s new school nurse, Evelyn, came to the house early this morning to get acquainted and learn Rudy’s care regimen before the bus arrived to take them both to the Bear Club classroom.  Our Rudy was happy to see bus driver Rudy again who has been reassigned to our Goleta route and happily went off to school with a big wave and a confident “Bye, bye Mama”.  Rolf and I stopped in at the classroom a couple of hours later to make sure his medical supplies at school were well stocked and he was settled.  Rudy was happily playing music with Teacher Diane and Nurse Evelyn when we left and fast asleep when he returned home on the bus (ha)…a tiring but satisfying first day for the Rudster…

As always…SO grateful for the great schools and quality education ALL of our kids are experiencing in our community’s public school system and praying for a lifelong love for learning to be stoked in Rudy and his sibs this year.

As we continue to focus on the adjustments for our family this fall season, our thoughts and prayers are with Daisy and her family as they are in Israel pursuing treatment for Daisy’s cancer that is not available in the U.S. Rolf and Olivia participated in a 3 mile paddle this past weekend in support of Daisy!  Love and hugs to you sweet girl!

Rudy had an appointment with his pediatrician and gastroenterologist  last week and has his monthly appt. with Dr. Harake tomorrow.  It’s always fun to see Dr. Kelts (GI) but it was particularly fun to go to his office last week because we got to see our friend Tera!!!  Tera is a fellow La Patera, GVJH and DPHS mom and friendly neighborhood peds nurse on whom we have called many times when we’ve had those late night questions or concerns.  Tera kindly filled in for  Dr. Kelts’ vacationing nurse so we got to see our friend do her “professional nurse thang” on the clock for a change!  🙂  I love living in a small community where “everybody knows your name”.  Familiarity and friendship in the mundane daily details of a journey like this one brings such comfort.

We’ll be sure to report on any new news we glean from our time with Dr. Harake tomorrow…hopefully word from the cardiologists about decannulation!!!!!  🙂

Thank you for your prayers leading up to the start of school.  We are blessed by your commitment!

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.

Lots of Geyling love to you and yours!!

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 🙂

Blessings Dear Ones!!!

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.

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!!

Rudy had an appointment with Dr. Harake this morning.  Today’s echo showed the same enlargement of the right atrium and right ventricle as last month.  As would be expected in a heart where the right atrium and ventricle are pumping blood to both the lungs AND the body, Rudy’s 1/2 a heart is overworked.  The rerouting of the circulatory system between the heart and lungs that happens in the Glenn and Fontan surgeries would help to relieve the extra pressure on the heart but outside the surgeries, there isn’t anything we can do about it.  The relationship between Rudy’s enlarged heart, pulmonary pressures, collaterals, etc is so intricately intertwined and the need for the Glenn and Fontan becomes more urgent to us as our understanding of it all becomes more clear!

Another common complication in Rudy’s condition is a “leaky” tricuspid valve as a result of the valve not closing properly.  Dr. Harake has detected mild leakage for a while but today he feels the leakage is increasing from mild to more moderate.  For now, we will treat it with an increase in medication he’s already taking but there is a chance surgery will be needed to repair it down the road…we’ll keep an eye on it.  Today’s appointment left me with some questions for Drs. Dan and Harake when we consult with them after the cath.

Rudy is second on the schedule on Wednesday but we’ll need to report to the hospital at 6am just in case the schedule changes at the last minute…it’ll be an early departure for us from Santa Barbara which is becoming the custom.  🙂  Thank you for your prayers and words of encouragement…we’re so grateful for you!

Yesterday was special…a sweet reminder that life ebbs and flows and that it is possible for joy to be restored after the loss of a child.  We’ve watched life continue to be lived in the lives of many of the heart families we’ve bonded with since our journey with Rudy began…families who, like us,  found themselves thrust into  a new reality with the birth of their heart baby and, as we’ve reported over the years, some of these families continue to live life one day at a time with their medically fragile child and some have had to endure the agonizing loss of their precious one.  Rolf and I have felt, deeply, the loss of special friends like Katie and Josiah and, of course, Logan.  Unlike us, most of our fellow heart parents are young 🙂 so we’ve had the pleasure of watching these special young families continue to grow!!

Katie’s parents have a sweet little boy and are expecting a new baby very soon, Josiah’s parents were blessed with a baby girl (making it THREE girls!) this past spring and Logan’s parents, well, they are thrilled to welcome a baby boy who is due in just a couple of months!!  Olivia, Rudy and I got to celebrate with the Elliott’s yesterday at their baby shower and it was great fun to share in their joy!!!  When Rayme found out she was pregnant she called him her “Rainbow Baby”…the rainbow that came after the darkest of storms.  We are thrilled for Rayme, Brett and their girls and so grateful for Logan who, with Rudy, knit our families together forever.

An extra-special bonus to yesterday’s baby shower was getting to see nurse Sara again!  Nurse Sara (who drove all the way up from L.A. to attend the shower) cared for Rudy and Logan in the CTICU at UCLA and is very special to both our families.  We enjoyed a nice, long visit and Sara was super sweet to give Rudy his g-tube feed for me in the middle of the party (I thought maybe she was missing such a task with it being her day off and all – ha).  Sara hadn’t seen Rudy in person for quite some time and she was excited to see how much he has grown and developed – it was so affirming to talk with her!

And so, here we are, closing the books on this crazy, chaotic month of July and looking ahead with anticipation to August.  Wilson is leaving for a 10 day missions trip to Costa Rica tomorrow (Monday) and Rudy’s heart cath is on Wednesday!!!  Rudy has a pre-cath appointment with Dr. Harake (cardiologist) on Monday, we’ll skip therapy and stay close to home on Tuesday, most likely be in L.A. on Wednesday and Thursday  and then recuperate at home over the weekend.  You’d think we would have learned by now not to get anxious about the cath but we do (shame on us!)…it’s unavoidable so, instead, we’ll tie up loose ends here at home and send Wilson off on his big adventure with a nagging pit in our stomachs and a couple of restless nights’ sleep.  Ha  We’ll keep you posted…thank you for praying!

Rudy had a BIG week this week participating in his very first Vacation Bible School!  I felt very nostalgic (i.e. weepy) watching Rudy enjoy himself, Olivia creatively prepare for each night’s special theme and the big boys lead from up front on the drama and worship teams all the while remembering my own fun experiences as a child (only back then we called it Backyard Bible School…I still have the bible I earned for memorizing bible verses.  ha).  We were all touched that Rudy had an opportunity to join the family in this special tradition and that everyone was so accommodating and concerned for Rudy’s well being.  He’s ending the week exhausted but it is energy well spent, for sure!!

Today marks the end of VBS as well as the end of summer school!  Rudy’s summer school session flew by and he brought home a treasure trove of art projects documenting the fun he had.  We appreciate the summer staff at Franklin School, the county staff and Rudy’s summer nurse so much…we consider Rudy’s opportunity to go to school a great gift and these folks make it possible!  He’s going to miss the Bear Club classroom team these next few weeks.

Medical Update:

* Rolf and Max took Rudy to UCLA on Monday for his appt. with Dr. Woo.  Based on April’s sleep study results, Dr. Woo is ready to sign off on Rudy’s trach wean!  I’ve talked with Dr. Shapiro (ENT) by phone and she has Rudy on standby with her scheduler.  If it is determined during Rudy’s heart cath on August 1st that no intervention or procedure is needed in the next 6-9 months then Dr. Shapiro will get him on her OR calendar for a bronchoscopy and decannulation.  If surgery is in Rudy’s near future, then it would be best to keep the trach.  Either way changes are ahead and that’s exciting.

* Rudy has been doing a great job adjusting to and tolerating his foot braces (AFO’s) and he’ll start using them in therapy in a couple of weeks.

* Our lice infestation at home is under control but I’m totally living in a constant state of paranoia!  When Rolf came home from work yesterday and found me wearing a hair net, he asked if I was going to stop wearing them by the time we take our family Christmas picture in November!   Um, yeah, NO!  Ha Ha  ‘Praying we remain lice-free!!!!

Make-a-Wish Update:

A few folks have inquired if frequent flyer miles can be donated to Rudy’s wish trip to Florida specifically.  I asked a representative from our nearest MaW office in Ventura who is handling this appeal and she said that miles can be donated “in honor of Rudy” and attributed toward the total number of miles needed for our family’s trip but the actual miles are put into a “mile bank”, so to speak, since miles are donated from a variety of different carriers and we’ll need a block of miles from one specific carrier for our family to travel together.  Does that make sense?  So, if you have some extra miles that you know you won’t use and you aren’t interested in trading them in for a magazine subscription, would you consider donating them to Make-a-Wish in honor of Rudy?  Our trip to “Give Kids The World” is being planned for early 2013 so there’s plenty of time…you can contact Shanna Taylor at staylor@tri-counties.wish.org for more information.  The initial appeal that went out through Noozhawk (a local internet news publication) yielded over 120,000 miles!  We are so happy to lend our story to this appeal and excited to learn more about this great organization as we travel this special “wish journey” with them!  Thanks all!

I’m eager to get back to a normal routine next week…hopefully with less laundry and more summer fun.  Blessings to you, dear friends.  May you be encouraged and uplifted!