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!

There actually may be light at the end of the tunnel!!!  After 6 days of non-stop effort and a round of buzz cuts for the boys, we may be nearing the end of our lice infestation.  I’m sure praying it’s so…this has been a draining week on all levels and we have VBS at our church next week with all of us volunteering in various roles so we need to be free and clear!

Life definitely took a detour this week but we managed to pack in a great deal nonetheless (with heads covered, of course!). Ha Ha  We took a break from all that was happening at home for a few hours on Wednesday and enjoyed the annual BBQ feast at the Rescue Mission for the homeless guests.  We were blessed with  mild weather so everyone felt comfortable hanging out all afternoon (unlike years past when guests would eat and run in search of shade), a great mix of amplified tunes led to some spontaneous dancing in the parking lot and all genuinely felt relaxed and happy.  I heard from a couple of guests how nice it was to feel welcomed at a public 4th of July event for a change!  I’m so grateful the staff and residents at the Rescue Mission can provide that kind of loving experience to the homeless in our community.  On Thursday night we enjoyed having the women who are graduating from the Rescue Mission Recovery Program tonight over for dinner…like last week when we hosted the men, we were in awe of these women and their courage in their recovery journey.  Tonight is graduation so we have a big evening ahead of us!  Lots of hope happening at SBRM this week, for sure! 🙂  And, it’s all been a helpful reminder for me to keep my troubles in proper perspective.

As for Rudy, well, he has been somewhat neglected this week…all the kids were great at stepping in and helping with Rudy when Rolf and I just couldn’t (including an incident involving a very messy, runny diaper that I won’t elaborate on right now but it was epic) but he definitely was forced to stay in his little “kiddie corral” a good bit of the week.  Why does Rudy have a kiddie corral, you ask?  Oh, well that would be because of the incident that happened last week before we were hit with the whole lice situation…when Olivia, Rudy and I returned home one afternoon from our mid-day shuttle run pick-ups.

I gave Rudy his afternoon feed, meds, changed his diaper,etc and set him up with Olivia to watch a little t.v. and chill while I tried to get some paperwork done in my room.  Because it was a hot day, I left the garage door open to get a little cross breeze through my room as I always do on hot days and, ahhhh, all was quiet and settled in the house of Geyling.  Now, I admit, I was remiss not to check on the kids for an hour but all was quiet and I assumed the kids fell asleep after a long day at their various summer activities.  Well, you know what happens when one assumes, right?

Olivia came to my room white as a ghost and said “Mom, there was a knock at the front door, I opened it and…”.  When she paused, I immediately went into “stranger danger” mode wondering what in the world could have left her somewhat traumatized.  “It was Rudy, Mom!!!”  What?  How could it be Rudy?  We both ran to the living room where she left him to find him detached from his oxygen, dirty and battered on the backs of his thighs and legs!  We then traced his steps and discovered that he had bottom-scooted down the hall toward my room, got down the step into the garage, unplugged himself from the oxygen halfway through the garage and out the door he went (much like he did the day we cleaned out the garage but this time we weren’t out there with him!!!)  From the looks of his legs and diaper, his incredible journey included a little jaunt on the asphalt as well as time spent in our front yard as evidenced by the prickly balls that were stuck to his diaper!!!  Thanks be to God, he had the presence of mind when he was done exploring to bottom-scoot back up the incline to our front door and knock loud enough for Olivia to hear him!!!  Needless to say, we promptly got Rudy cleaned up and got the house closed up completely grateful the incident was something we could laugh at once our hearts stopped pounding.  Rudy was happy as a lark and very proud of himself, of course.

I’ve done the toddler thing three times before, I should know better but it was beyond my imagination that Rudy could do what he did to begin with and then do it so quietly that I wouldn’t hear him grunt as he worked his way down the step (which, by the way, is just a few feet from where I was) or cackle as he glided across the garage floor as he does when he’s excited!  Good grief.  This boy is READY to MOVE and expand his world!!!

Well, it looks like Rudy’s incredible journey may take flight sometime this winter.  We’ve been in a process with the Make-A-Wish Foundation for a few months now discussing an opportunity to take the family to “Give Kids The World” – a resort in Florida designed specifically for kids with life-threatening illnesses and their families.  A friend of mine went last year with her niece and said she couldn’t stop thinking of Rudy the whole time she was there.  How sweet! I haven’t wanted to get my hopes up too high because a lot could happen between now and January when we hope to go but the article linked below was published in a local paper this week mentioning our trip and requesting frequent flyer mile donations!  It really got us excited!  Check it out!!!

Noozhawk article

We are humbled and totally honored that the Make-A-Wish Foundation is even considering granting Rudy and our family a wish for a fun, memory making trip that is safe for Rudy!  The staff and volunteers we’ve talked to have been amazing …so sensitive and caring and fun.  Boy, this week sure has been filled with a wide range of extreme emotions!  The bottom line is…God is good, all the time…in the good times and the bad!!!  Bless you friends…especially those living in all the hot spots and fire spots across the country…I’ve been praying for you too!  Love and hugs…

Well, just as we wrapped up Wilson’s infected leg wound issue (yes, his culture came back positive for MRSA!  Thankfully, he was on the appropriate antibiotic at home so no further intervention was necessary) our household got hit head-on (no pun intended) with lice!!  Yep, for a gal who is a borderline germ-a-phobe, this isn’t a great week for me!  We’re not sure how long we’ve had it but we all have it and are on day 2 of treatment with accompanying laundry marathon.  I admit I’m feeling very overwhelmed and burdened with trying to treat everyone while keeping up with the constant cleaning that has to happen.  I dreamt last night that we got everything cleaned up, closed up and then left for an exotic vacation for 28 days (the recommended time one should keep things bagged up after treatment)!  Needless to say, I was sad to wake up.

The kids, on the other hand, have been amazing troopers (and Rolf?…quite the nit-picker!) and all are maintaining pretty good attitudes…I’m making everyone wear hair caps at home and there were even ideas thrown around last night for a “Lunch Lady” song…stay tuned!  Ha The silver lining in this is that we found Olivia’s lost iPod yesterday when we tore her room apart for a deep cleaning…that made us happy.  We have a huge week ahead…lice aren’t the end of the world but they sure are disrupting our world and are hard to manage when you’re low on emotional reserves to begin with…would you please pray…that we’ll nip this in the bud with this first 7-day treatment regimen and for, well, stamina, I guess?  So grateful for the friends who have been able to lend a hand and our prayer warriors near and far!  Bless you friends…Happy 4th of July!!!

Check out Rudy’s cute trach-tie tan line…posting it just because…

Rockin’ the hair nets!

Rudy got a very special delivery from Tri-County Mobility today…

It took several months but Rudy’s new wheelchair arrived today…and after a few adjustments:

Rudy was ready to cruise State Street…

We are so grateful for the many ways God has provided for Rudy’s mobility.  When our first attempt to get Rudy a wheelchair hit a frustrating dead end, we were incredibly blessed by the Ruppert family who passed down their daughter’s medical stroller to us almost 2 years ago (!!!) and just when Rudy started to outgrow the medical stroller, he qualified for CCS which opened the door for a second attempt at a wheelchair resulting in today’s delivery!   Wow!

Rudy also had cast molds made of his legs recently for the manufacturing of leg braces that we’ll start using in therapy…his cool Superman braces are due to arrive in the next few weeks so there are a couple of new adjustments ahead for Rudy in the DME (Durable Medical Equipment) department.

And all this excitement comes after a particularly full weekend that included…

In addition to all the activity in our household, Rudy is starting to call the sibs by name…well, his names!  Wilson is “Bubba” (which we think is “Brother”), Max is “AppleD” (which we think is “Hi Buddy”) and Olivia is “I-ya”!  It is so precious and, of course, the big kids melt every time Rudy calls them by their nicknames.

He demonstrated that he’s really catching on to the name game when he called a local blog-friend by name as Rolf checked her blog for an update last night…we love you Daisy!

Okay, well I guess I better run…it appears I’ve been on the blog a little too long and not attending to Rudy much this afternoon given where he has ended up…

Life is swirling and we’re trying hard to savor each swirl!  Bless you friends!!

We are excited to report that we finally heard back from Dr. Woo’s (pulmonology) office with the results from Rudy’s April 16th sleep study and the word is “he did well”!  We have an appointment with Dr. Woo scheduled for July 9th so we’ll get a chance to talk with her directly and get more details then but for now we are grateful for encouraging results.  Unfortunately we won’t be able to start the process of weaning Rudy off the trach right away because Rudy’s next heart cath is so soon and if by some miracle it is determined that Rudy is a Glenn candidate after the cath, then the docs would prefer to keep Rudy trached as it’s much easier to vent him during procedures with the trach.  So, we’ll have to wait a bit more and see what develops in the next couple of months.

It was confirmed today at Rudy’s monthly cardiology appt that his heart cath is scheduled for August 1st at UCLA…he’ll be the first or second case on the schedule that day and, most likely, need to spend the night for observation.  Rudy’s heart looks about the same…Dr. Harake did report that Rudy’s right atrium is quite enlarged.  This is a rather common complication with HLHS hearts but he did say that this along with the coarctation of the aorta and the pulmonary hypertension are all potential obstacles to a successful Glenn.  We’ve talked about Rudy’s enlarged heart before but he seemed to indicate that the right atrium appears larger.  We’ll likely discuss this more after the cath but it’s a helpful (and somewhat sobering) reminder to us that success in treating Rudy’s pulmonary hypertension (which is what we’ve been focused on for so long) won’t necessarily give us a green light to the Glenn…there are quite a few variables that need to align to give Rudy  a chance at a successful Glenn procedure.  I really wish we could simplify the situation to a couple of neat and tidy “bullet points” that make all the information easier to digest but even in layman’s terms it’s complicated and that feels a little heavy.  (big sigh)

Sadly, today was also Rudy’s last day with Nurse Marecar.  Although nurses moving on is a common and understandable occurrence, it’s never easy to say goodbye to a special care-giver and adjust to someone new.  Nurse Marecar was Rudy’s school nurse who rode with him on the bus, accompanied him in the classroom and rode back home with him.  He was  happy to see Nurse “Keg” each school day and she will be greatly missed.  We wish her well, though, and thank her for her sweet care of Rudy these past 5 1/2 months.

Tomorrow we welcome Nurse Cat to “Team Rudy” and look forward to getting to know her more as she has committed to Rudy’s school gig for the summer.  Ever humbled and grateful for the village it takes to educate our son!  🙂

Thank you all for your commitment to pray!!!  There is much to praise God for – always – and much to continue to pray for – always!  Ever grateful for YOU…