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!

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 (1^st 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 10^th 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…

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…

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!

It’s late and the house is quiet…all survived the first day of school and slowly but surely we are falling into a familiar routine again.  As predicted, Rudy was pretty lonely after the big sibs left for school but he did take a long afternoon nap and was quite animated this evening with everyone home again.  So sweet!!

Check out the proud pupils…

 9th grader Wilson!

7th grader Max!

4th grader Olivia!

 We’re off to a good start and trust this school year will be full of fun new experiences.  Rudy’s new therapy schedule at the CCS (California Children’s Services) clinic starts next week so our new fall schedule continues to take shape.  We’ll let you know how it goes.  🙂

Neurologist (check), Ophthalmologist (check), Gastroenterologist (check), Cardiologist (check), Endocrinologist (check)…the only one we’re missing is the Pulmonologist and we’re still working on getting that appointment with the new pulmonologist at UCLA so our checklist is nearly complete.  Ha Ha

Our week of appointments for Rudy is over and most everything is checking out okay – no major changes but there is some new information. 

Rudy’s seizures have stabilized and so Dr. Corazza (neurologist) would like to keep Rudy on the same dose of Keppra until we see him again in December. 

I was eager to talk to Dr. Silverberg (ophthalmologist) as we hadn’t seen him in a year and I wanted to update him on the information we got in May about the brain insults to Rudy’s occipital lobe from his stroke activity since this is the part of the brain associated with vision.  He’s so good with Rudy and so skilled in his exam.  Unfortunately there isn’t much we can do at this point to determine if any of Rudy’s fields of vision have been affected by the brain damage…we just need to wait until he gets older.  The good news coming out of ophthalmology is that Rudy doesn’t need glasses at this time after all.  Dr. S felt his astigmatism was significant enough last year to warrant glasses but wanted to wait to prescribe them and now he feels the astigmatism is lessening which means no glasses – yippy!  🙂

It’s always good to check in with Dr. Kelts (gastroenterologist) as he is my “big picture” guy.  Although he helps us manage Rudy’s g-tube and feeds specifically, he also keeps an eye on Rudy’s overall condition and addresses specifics as needed – so helpful.   For example, we’ve been concerned that Rudy’s chest incision has never fully healed…there is a pesky little suture that never dissolved or receded as it should have and I was advised to trim it the next time it surfaced but because of the perpetual oozing wound and scab it produces, I could never get to it to trim it.  It’s kind of a minor issue and somewhat unrelated for the majority of Rudy’s specialists to address but Dr. Kelts noted it immediately and when he asked me about it, I asked him if we should try to find a wound care specialist as we were having a tough time resolving it ourselves to which he responded “I’m it”…he quickly prescribed a topical medication and said if we can’t get to the suture after it heals, then we’ll take care of it surgically once and for all.  THANK YOU!!!  It sounds simple and stupid but there are certain things in Rudy’s condition that don’t fall under any specific doctor’s umbrella and because we have, essentially, two teams of doctors in LA and SB, there are times when a doctor is reluctant to act as not to step on another doctor’s toes or interfere with another doctor’s treatment.  It is an interesting little dynamic we deal with at times which is why I appreciate it so much when a doctor like Dr. Kelts comes in, takes the bull by the horn and attempts to make things happen for Rudy that are long overdue.  🙂

The other symptom Dr. Kelts noted was how dusky Rudy looked which brings us to cardiology…It has been a subtle change but I’ve noticed in recent weeks that Rudy is a bit bluer than usual although his O2 sats aren’t dramatically different.  Dr. Harake took his time and did a thorough echo.  He didn’t see a huge change but he would like to see Rudy again in a month and he would like to get a heart cath scheduled for this fall.  Eventually, Rudy will outgrow the shunt that was placed in his heart during the Norwood procedure when he was 5 days old.  It will be a gradual process and could be happening now which would explain him getting duskier.  Right now Rudy’s O2 sats register between the mid-70s to low-80s.  The need to act will come when his sats drop down to the low-70s to high-60s.  When that time comes, there could be the option to put in a larger shunt.  We always assumed that putting in a larger shunt would buy us more time allowing Rudy’s lungs to mature and get him “Glenn-ready”.  However, in talking with Dr. Harake yesterday, he explained in more detail that choosing to replace the shunt would actually put the Glenn further out of reach as a larger shunt would increase Rudy’s pulmonary pressure which is why he’s not a candidate for the Glenn now.  Wait…What?  This is a new and very significant piece of information that changes the mental game for me and Rolf…we need to take the time to research this and understand it better but it is a bit sobering.  We always thought the decision to get Rudy a larger shunt would be a way TO the Glenn not instead of it.  The reality is we’ve never really had “choices” where Rudy is concerned…all throughout this journey we’ve only had one treatment option when the need to act came along and so there is no point in obsessing over the “what ifs” to come but it was nice to feel like we had a “safety net” of sorts…to feel like we could buy some time with a shunt replacement.  As Dr. Harake reiterated yesterday, we will make the best choice for Rudy with the treatment options that are available to us at the time we need to act and that needs to be our focus but it sure is hard not to get consumed by the frightening unknowns hidden in that simple objective!  Although not panicked, our minds are swirling again and my heart is burdened – at a time when I want to emotionally circle the wagons and protect Rudy and our family, it’s actually time to start another school year and physically scatter everyone all about…to different schools and all kinds of activities. 

Today is one of those days when I don’t want to be a grown up!   🙂

The first available heart cath is October 6^th which is only two days before the Heart Walk so we’re hoping for an alternative date…we’ll keep you posted. 

We’re bracing ourselves for a full fall…thank you for supporting us in prayer!  How indescribably grateful we are!!!  🙂

You may recall that in celebration of Rudy’s birthday last October, our family and some friends participated in the American Heart Association’s Santa Barbara Heart Walk to raise funds for pediatric research and programs.  At the time of the walk, we were anticipating and very excited about a trip to UCLA for Rudy’s next heart cath and, we hoped, the green light to move forward with Rudy’s next heart surgery.  As most of you know, the news from Rudy’s heart cath on October 21^st was not what we had hoped.  Not only was Rudy not ready for his heart surgery but he was officially declared not a candidate for surgery or a heart transplant at all because of high pulmonary pressures and poor lung function in general.  Shocked and in disbelief we sat with two of Rudy’s cardiologists after the cath to try to understand what options Rudy had.  In short, they described that Rudy had exhausted his current medical options but that we shouldn’t lose hope because “there may likely be treatment options available to Rudy in 6 months that aren’t available today”.

At the time, this felt very daunting and the wind was certainly taken out of our sails but in the 10 months since, we have been encouraged by Rudy’s growth, developmental progress and obvious love for life.  As a result, we are hopeful that God is, indeed, allowing Rudy time – valuable time that could very well provide new treatment options for him.    We are motivated more than ever to help in the effort to raise research funds.  Last year, our team (Dr. Harake’s Moms with Heart) raised over $10,000 for pediatric research through the Heart Walk campaign ~ an amazing success!  We certainly surpassed all our fundraising expectations going into it and, more importantly, it was a meaningful experience for our family and such a special birthday celebration for Rudy.

For all of these reasons, our family is excited to participate, once again, in this very personal campaign to celebrate Rudy turning 3 years old in just two months!!  By participating in this year’s Heart Walk on Saturday, October 8^th, we hope to recruit a team and raise another $10,000 in research funds vital to a potentially healthy and active future for Rudy and kids like him.  Will you consider joining us by donating today or joining “Team Rudy” in Rudy’s honor?

To visit our family’s personal donation page, follow these simple steps:

1.  Go to “www.sbheartwalk.com”
2. Click “Donate” on the Home Page
3. Enter my name:  First Name “Trish”, Last name “Geyling” and click “Search”
4. Follow the instruction to click on our family’s name and you’re there!!

Here’s some more specific information:

The 20^th Annual Santa Barbara Heart Walk

Saturday, October 8, 2011

Fess Parker’s Doubletree Resort:  Registration at 9:00am – 5k Walk at 10:00am

Let’s Party!!!

For those of you who are close enough to walk the walk in person, we will gather the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake and party favors at the finish line!!  What a great way to spend a gorgeous October morning in Santa Barbara!  We hope you can join the fun.  Let us know you’re coming and we’ll reserve a balloon for you! 🙂 (rsvp to trish@silverbytrish.com)

2010 Fundraising results!!! 

Look close…Rudy’s family and friends were #1 and Logan’s family and friends were #2 ~ We were neighbors in the CTICU at UCLA and forever partners in our SB Heart Walk efforts!  Santa Barbara Heart Families ROCK!

Join our WINNING Team!!!