Gosh, sorry we haven’t posted in awhile…truth be told, I’ve been waiting to post the sleep study results but as of Friday, Rudy’s pulmonologist at UCLA hadn’t heard back from the folks at CHLA with the report yet so we’re still waiting.  Hopefully we’ll hear back this week.  I’m also waiting to hear confirmation on Rudy’s heart cath date in July so there are still a number of details that are up in the air for our family regarding the summer schedule which is making it hard for this type A personality to relax.  🙂  We have a day trip to UCLA on July 9th for a couple of appointments and then again later in the month for the heart cath with appts with Rudy’s specialists here in Santa Barbara in between so July will be full with medical stuff but I’m working hard to keep the rest of the summer medical appointment/procedure-free.

We celebrated another friend’s wedding, Mother’s Day, a couple of end-of-the-year school performances AND Rolf’s Birthday since we posted last!!!  We sure haven’t been lacking in celebrations this spring!  🙂  Rudy has hung in there through most of it but he sure prefers hanging out at home…especially now that we’re spending more time outdoors in our backyard.  Rudy is content to play in his wading pool for hours (if we’d let him) and laughs his big belly laugh while watching the big kids play their crazy games in the big pool.  He’s getting pretty cocky on his little trike too and likes to head full speed down the incline of our driveway into the cul-de-sac!  I have to admit that I’m beginning to wonder if the increase in physical activity puts too much strain on his half a heart…a heart-mom worry that I haven’t really experienced yet…but then again, I’m not sure he’d have it any other way and the quality of life benefit is certainly abundant so I try to tuck away the worry and trust God, as always, for every detail.

Here’s a quick look at some of the fun…

Okay, I’ll stop with the miscellaneous post for now…hopefully we’ll have something specific to report this week from UCLA!  Ever grateful…

From the start of our journey with Rudy, Rolf and I have attempted to be honest with the big kids and not keep important information from them that they are able to understand even if that information is bad news or scary.  It has been important for all of us to face the reality of our situation head-on and, hopefully, navigate all the ups and downs as healthy as possible.  I’d like to say Rolf and I have been really good at sitting down with the kids and “updating” them as needed with open discussions about how Rudy is doing and asking them how they are doing but the reality is that doesn’t happen very often.  The kids are usually informed by the quick call home after a hospital procedure or the mention of a dr. appt at the dinner table or, frankly, by posts on Rudy’s Beat and the intentional dialogue usually happens one-on-one during car rides from school or to an activity.  Sometimes I make an attempt to talk to the big kids about Rudy and they aren’t in the mood.  So, you charge along in the fast-paced life of a family that is growing up thinking you have a good handle on how everyone is doing and what everyone is feeling and then, out of the blue,  you catch a glimpse of your kids…a deeper insight into their thoughts…and you realize the impact of life’s unique experiences runs so much deeper than you hear about in those quick “check-ins” from time to time.

Sometimes it can come indirectly like when Olivia asked me if there are any “nursing” summer camps out there that she could sign up for this summer!!!  (Nursing summer camps? Yikes!  I have no idea)  Gee, I wonder what’s shaping that interest?

And sometimes it can come directly through an English writing assignment  that ends up getting published in the school newspaper as Max’s did last week:

Here, let me zoom in a bit…it’s worth a read:

I so love that Max chose to write this article…I don’t think I’ve ever had the opportunity to hear his take on Rudy like this and a couple of things surprised me but mostly I love his “shout out” to Rudy’s doctors and nurses (timely, with this being “Nurse Appreciation Week”!) and his assessment that, in the end, the extra work involved in caring for Rudy is all worth it!  Who knows, maybe we have a future blogger or two or three in our midst?!  Ha 🙂  I hung Max’s article on the wall next to Rudy’s crib…a helpful reminder that the big kids are thinking and feeling and processing more than I give them credit for and prayer for their “heart health” is just as important as for Rudy’s :).

Rudy saw Dr. Harake (SB cardiologist) yesterday and he would like to get Rudy’s next heart cath on the calendar for sometime in July.  Right now the available dates are possibly July 18th but it will most likely be scheduled for July 31st or August 1st.  He hopes to go in and devote the whole time to coiling collateral veins so it could be another long session in the cath lab for all involved.  For some reason, I had it in my head that we would pursue the next cath in the fall so I was a little surprised by the summer target date…it doesn’t really matter when we do it but this will be a helpful date to solidify as I work to chart out our summer schedule.  We don’t have any big travel plans but between Wilson’s summer school classes at SB City College, Max’s desire to participate in a theater camp and Livy’s plan to live in the water, the summer is already starting to fill up!  Ha Ha

We’ll also need to look closely at any plans we may have to wean Rudy off the trach if he passes the sleep study.  It’s so much easier to anesthetize and vent Rudy during surgical procedures when he’s trached so it could be wise to hold off on weaning him with a procedure coming up.  There are a ton of “what ifs” in that scenario and may even be a moot point if he doesn’t pass the sleep study so we won’t worry about it now but, I admit, the thought of delaying decannulation is disappointing.  We’ll see…

Rudy sees the urologist tomorrow so we’ll have more to report then…in the meantime, have a happy day!

As suspected it took me a few days to recover from last Monday’s trip to Los Angeles and short night’s sleep…Rudy didn’t seem to skip a beat!  Ha Ha  It’s kind of sad when your son with half a heart has more energy than you do.  🙂  Needless to say, I’ve had a quieter week trying to catch up on life here at home.  We typically don’t get the sleep study results for a few weeks so we need to wait a bit but I’m so relieved they were able to get a good stretch of data during the study that I can live with whatever the outcome may be.  I did, however, buy this floatie swimsuit for Rudy at WalMart on our way home from the hospital in faith that he’ll be able to swim in our pool this summer!!

Speaking of the pool, yesterday was the official opening of the 2012 swim season here at the Geylings!  The water is FREEZING but that didn’t stop the big kids from spending the afternoon engaged in swimming and pool-related activities!!  Even Rudy took a spin on the stand-up paddle (SUP) board…

This next week is a full one with our monthly visit to the cardiologist and our consult with a urologist in town to discuss Rudy’s, shall we say, lopsided bits and pieces.  His undescended testie may require surgical intervention but we’re praying the “ball will drop” as our friend Kim so eloquently put it and all will be well down under for the sweet boy.  We’re looking forward to our annual tradition of hosting the kids’ teachers for dinner (we get to include Rudy’s teachers this year!!) and a dear friend’s wedding here in town.  I love weeks that are loaded with things to celebrate!!!  Thank you again, friends, for sharing in the celebrations and concerns of this journey with us.  We’ll update as soon as we hear anything about the sleep study results.  Blessings…

Grandma Jo headed back home to Kansas yesterday and I have today (Sunday) to catch up on some paperwork and pack for Rudy’s and my trip to L.A. bright and early tomorrow.  Rudy has an appointment with pulmonology at UCLA tomorrow morning and then his sleep study at CHLA Monday night so we plan to make a day of it and hang out with some friends in between!  🙂  It will be a long day but my goal is to keep Rudy up and active ALL DAY so he’ll be too exhausted to fight the sleep study.  I don’t know, though, we may be fighting the grumpies with Rudy all week even without the sleep study since he’ll be going through “grandparent withdrawal”!  With Oma & Opa and Grandma’s visits happening back-to-back, Rudy has had the luxury of non-stop grandparent attention for the last few weeks!  This won’t be an easy week for him going cold-turkey and all.  🙂  To add insult to injury, our poor little guy gets to add another specialist to his long list…Rudy’s pediatrician feels there may be a little problem (nothing serious but could require surgery) with his bits and pieces and wants us to take him to see a urologist.  I’ll call to get that appointment on the books when we return from Los Angeles…for now, our focus is Rudy’s third attempt at the sleep study.  Please pray he’ll cooperate tomorrow night and the findings will be clear.  Our hope is that the sleep study results will show he is not dependent on his trach and therefore ready to wean off of it.  It seems to us that this is the case but there was some question last time as to whether or not Rudy was expelling enough carbon dioxide so we hope these intricate measurements are able to be captured and we’re left with no questions.  We’ll keep you posted and we thank you for your continued prayers for these tedious details.  Continuing on in this journey…one day at a time.

Here we are at the start of another week and it is a particularly bright Monday as we celebrate Wilson’s 15th Birthday!!!  Happy Birthday Big Boy!!

We didn’t have much to report this past week on the Rudy front as he continued to recuperate at home with a modified schedule.  He has just one day left on his antibiotic and his foot wound, though severe, is definitely on the mend. Rudy has been keeping busy with Grandma Jo since her arrival on Tuesday and is amazing her with his energy level.  🙂  Spring finally sprung in Santa Barbara…just in time for Easter!  After several weekends of wet, gloomy weather, the sun broke through this week and Rudy enjoyed a bunch of outdoor time on his trike.  He was able to return to school on Wednesday but didn’t go back to therapy so this week will be his first full week back in his normal schedule.  Unfortunately he’ll have to miss another couple of days next week due to his scheduled overnight sleep study down at CHLA on the 16th but that shouldn’t require any recuperation time once we get home.  🙂

Even though our schedule was a little quirky last week, we were able to enjoy some special holy week events that culminated in a wonderful Easter celebration yesterday.  The highlight of the week was Olivia’s baptism at our church’s sunrise service!  A cherished time, indeed.  It’s hard to believe Easter is now behind us and summer break is less than two months away…the official countdown to summer is on!  Ha Ha

We are grateful to be past this latest heart cath and settling back into that stretch of time between caths that feels a bit more “normal”.  We were saddened on Friday to hear that our little friend Daisy is battling another cancerous tumor…her third in three years.  So, as we wait in quiet limbo with Rudy, we ask that you add Daisy to your prayer list as she gears up for another surgery this week and treatment yet to be determined.  Her joyful faith has encouraged us in our walk with Rudy and we pray for God’s continued healing and comfort for Daisy and her family.

Here’s a little recap of last week’s goings-on:

I actually have a few more pics I’d like to share but our internet connection is SO BAD I seriously can’t muster up any more patience to download any more pics!!!!  We’ll be changing our service on Friday so be ready for some speedy posts real soon!  Ha Ha  Bless you all and thank you for your friendship and encouragement.  Please don’t forget to pray for Daisy!  🙂

Thanks for all the funny and helpful comments about Rudy’s foot…we watched Toe-cephus carefully all weekend and got Rudy in to see the pediatrician yesterday.  As we suspected, it appeared to Dr. Abbott Sr. to be a pressure wound from the IV wrap.  He didn’t suspect it was infected but took a culture sample just to make sure.  It looks ugly but it’s on the mend.

We saw Dr. Harake today for a follow-up to the cath.  He did an echo and we discussed Dr. Dan’s notes from the cath lab.  Dr. Harake explained again that there are several variables that all need to show improvement before Rudy would be considered for the Glenn…variables that include pulmonary pressures, ventricle function, lung ventilation, etc.  Although all the variables are not yet aligned, we are slowly seeing improvement in most of them so our patience is paying off.  One thing that is for sure in the meantime is the need to coil as many of the remaining collateral veins as is possible.   We’ll give Rudy time to recuperate from this procedure  but Dr. Harake feels we should get the next cath on the calendar within the next several months for a marathon collateral coiling.  He also feels that now that the Sano Shunt is opened up, there isn’t the need to stent the aorta at this time.  There is greater risk in stenting the aorta than not at this point so we’ll wait.

So, with it being spring break here, we’ll rest up and lay low the rest of this week.  Oma and Opa left yesterday and the big kids are off in all different directions having fun so Rudy is a little lonely.  Luckily Grandma Jo is next on the list to visit us next week so he’ll soon have the undivided attention of a grandparent again.  Ha Ha

Thank you for your prayers and well wishes.  We’re still feeling scattered but grateful.  Happy Spring Everybody!!!

Ahhhhhhh, we are headed home after a restless night’s sleep and we’re all pretty grateful we’ll be sleeping in our own beds tonight!  Rudy’s discharge went pretty smoothly this morning and after an echo, a check-in with one of the cardiology fellows and a visit from Dr. Rick, we were on our way by 1pm.

As Rolf mentioned briefly yesterday, the cath results are favorable.  Rudy’s lung function is, indeed, improving.  He’s still not a Glenn candidate but, like last time, he is heading in the right direction!  One report that surprises us in particular is that the O2 sats coming out of his right lung are measuring in the 90s!  To put things in context…when Rudy was diagnosed with his chronic lung disease and put on a continuous supply of oxygen in June of 09, his O2 sats coming out of both lungs were in the low 70s (meaning that the blood coming out of the lungs was only 70% oxygenated when it should have been 100%).  Over the past two years, we have seen gradual improvement in the left side to where it reached the upper 90s last fall but the right lung was still measuring in the 70s…this made sense because the right lung saw the most damage during Rudy’s battle with the chylous fluid in his chest cavity after the Norwood surgery in 2008.  Well, being patient has paid off as it looks like the O2 sats coming out of both lungs are near normal.  This is thrilling news and an indication that the lungs are slowly healing.  Dr. Dan even questioned why we still have him on oxygen!!  In follow-up conversations, no one is willing to dc the supplemental oxygen at this point but it’s definitely something to keep an eye on!

Rudy’s pulmonary pressures are still too high for surgery but better than the numbers last fall so, again, there is reason to celebrate.

Rudy’s heart function is stable…it is enlarged as Dr. Harake mentioned in our last office visit but Dr. Dan didn’t make mention of it being a problem at this point.  Our biggest battle right now is to keep the blood flowing while we wait.  The 5mm Sano shunt that Rudy’s surgeon, Dr. Brian, put in during the Norwood procedure has gradually gotten smaller over time as tissue encapsulates it.  Even if it wasn’t getting smaller, the team would usually expect kids to outgrow these shunts–there are some who marvel at how Rudy hadn’t already grown out of it since so much time has passed since the Norwood.  Yesterday’s cath showed that it was down to 1mm–very small by any standard (we found it hard to believe them when they told us not to worry that it was all of 2.6mm a year ago.)  Drs. Dan and Harake first attempted ballooning the shunt to expand it but that didn’t work so they ended up implanting two stents and got it open to 4.5mm.  This will keep the blood flowing between the heart and lungs and buy us some more time.  Ironically, they did not balloon or stent the aorta as originally planned.  We were under the impression that stenting the shunt was a more pressing matter to address.  I’ll have to ask Dr. Harake more about that at our follow up echo next week.

Lastly, Rudy’s body is continuing to forge it’s own answer to the lack of passageways for the blood to flow by producing new collateral veins.  I’m still amazed at the human body’s ability to create these webs of alternative routes but the collateral veins create problems.  In order to have a successful Glenn down the road, the Drs. need to be able to control where the blood flows and these collaterals that are trying to serve a purpose end up becoming an inefficient way for the blood to circulate and weaken the whole system the docs are trying to construct.  As a result, Drs. Dan and Harake coiled a bunch of them yesterday (literally with coiled wire) and even used a special $4000 glue for one particularly large collateral.  Unfortunately, there are many, many more that will have to be coiled down the road but they got the big ones for now.

As always, we are blown away by and so grateful for the great care Rudy is getting and walk away from this procedure grateful to God for His work in the healing that is happening.  We continue to walk one baby step at a time!  Thank you for the many prayers offered up for our boy and family.  We are so relieved to have this one behind us and by the look on Rudy’s face as we drive into our cul-de-sac, I think Rudy’s relieved too!  🙂  Blessings dear friends.