Standby

standbyAs exciting as it was to see the ventilator removed and set on “Standby”, it turns out we’re standing by in a larger sense right now.  As they got Rudy extubated, Dr. Rick took time for a good listen and did not feel that Rudy was getting enough air to breath with out the machine.  Before they re-intubated, they called for an ultrasound which showed that his lungs are functioning as they should but the left diaphragm is not working properly preventing the left lung from getting enough air.  We are waiting for further assessment on the ultrasound film. 

So, another bump and we’re waiting to hear how the team will address this one.  So many things about life are on standby already–what’s a bit more.  It’s disappointing but has given us very helpful information.  It was good to see Rudy’s little unobstructed mouth and in the 30 minutes he had off the ventilator it looks like he was trying to scream, but it appears he’s got a killer sore throat (common among vent patients) and couldn’t vocalize anything.

Look at that pretty mouth! 

Look at that pretty mouth!

 

Here’s Rudy in action–
 
In the capable care of Dr. Rick and Nurse Rosella:
 

Coming to pull the tube…

It’s 9:40am here in sunny So Cal and the doctors just finished their morning rounds.  Although Rudy had a little hiccup around midnight when his saturation numbers went up and his blood pressure went down, they’ve decided to go ahead with the extubation.  Dr. Rick feels Rudy has a 60% chance of success but they really don’t know until they try.  Nurse Rosella just came in to get him positioned!  Poor thing, he has no idea what’s going to happen…Rolf and I are pacing the floor for him.  We’ll keep you posted….

Please Pray for Cesar!

There are a handful of families we’ve met since we’ve been in the CTICU that have become very special to us…Ceasar’s family is one of them.  Rolf and I have been wanting to introduce you to them through our blog and we will post a longer introduction later but for now will you pray for Cesar today as he is undergoing a second heart transplant as I write?  The news that they had a match came late last night and Cesar was taken down for prep around 3am!  We’ve watched this courageous family wait patiently for a heart for their 15 year old son since we met them a few weeks ago.  It took my breath away when Cesar’s mom came to Rudy’s room last night and told me they had a heart!  It will be a long day for this precious family.  Please pray the surgery is successful and that this heart is a perfect match for Cesar…I also can’t help but think of the family of the unknown donor…I pray God’s covering over them as well…Bless them!!!

On The Move…at 6 weeks old!

Preparing for crib to arrive...
Preparing for crib to arrive...
“Well, we’re movin’ on up (movin’ on up) to the top.  To a deluxe apartment in the sky-y-y”…
Logan’s mommy and I were singing “The Jeffersons” theme song today as we paraded around Rudy’s room waiting for his crib to arrive.  Yes, I said CRIB.  Just minutes before, when I came back from lunch, Nurses Filma and Rosella were busy preparing Rudy and all his lines for a switch to a crib…a big boy bed! 
It was quite a production requiring help from Oscar the RT as the ventilator needed to be turned off completely for a minute or two during the transfer.  Soon Nurse Filma lifted Rudy up, the bassinet was wheeled out, the crib was wheeled in and Rudy was chillin’ in a new       comfy bed.  An indication that he is “on the move”.
Today was Rudy’s 6-week birthday and he celebrated by successfully completing 2 four-hour sprints.  They started him off on a three-hour sprint early this morning and when he reached 3 hours with relative ease, they let him go for another hour!  Good job Rudy.   3-month old Logan, our CTICU neighbor two doors down and a fellow Santa Barbara-ite, was extubated today and I guess Rudy’s urge to compete kicked in because he excelled during his sprints and the docs think extubation is worth a try tomorrow!!!! 
Bye bye bassinet!
Bye bye bassinet!
This is exciting news!  Dr. Rick described it as a trial extubation to see how the diaphragm will perform.  An ultrasound today determined that the left diaphragm is not functioning as well as the right and tomorrows attempt will help determine why and whether or not if will hinder his ability to breathe on his own.  The fluid output is still a factor but not preventing us from moving forward at this point. All his little systems really need to pull together tomorrow morning and do their thing!!  Please pray for Rudy’s strength and that all the factors involved will cooperate with each other!!  Big Day!!!Whether or not it’s a successful attempt at getting Rudy off the ventilator, it does feel like a big step forward and it’s encouraging.  We’ll have to wait and see what tomorrow brings.

 

Nurses Filma and Rosella position Rudy
Nurses Filma and Rosella position Rudy
Final adjustments
Final adjustments

                                      

crib day 6

(Rudy’s new rig)
crib day 7

Rudy’s Bracelet

rudys-bracelet1

Shortly after Rudy’s diagnosis, we had some silicone bracelets made up to distribute to family and friends as a constant reminder to pray for Rudy.  The bright, turquoise bracelet with the message “Rudy’s captured my heart”  quickly became known as “Rudy’s Bracelet” when we started handing them out the day he was born.  They’ve become quite the popular fashion statement here on the central coast (ha) and due to a high volume of requests for them, we’re happy to offer them on Rudy’s Beat. If you would like a bracelet of your own, please send a self-addressed, STAMPED envelope for each bracelet (be sure to put 83 cents of postage on the envelope) to:

Rudy’s Bracelet c/o The Geylings

6250 Avenida Gorrion Ct.,  Goleta, CA 93117

The CUTEST big sister ever…

Rudy’s journey is draining on every member of our family in it’s own way, which makes me very grateful for when my kids have SUPER days.  Livy was excited to spend the day yesterday with Macey–said she was looking forward to it several times a day over the weekend, couldn’t stop talking about it afterward until she finally collapsed on the couch after dinner.  From the picture Greg posted on his blog, I think I know where her energy went…

http://www.zinkwazi.com/blog/index.php?showimage=1194

Thanks, Greg and Kim!  Perhaps a simple day, but oh-so-special for Olivia!

No Change

Rudy spent Veteran’s Day much like he spent Election Day one week ago…sleeping.  He did complete three 2-hour sprints successfully which nurse Katrine and I celebrated this evening.  It seems like we’re making progress with the sprints but he does seem to do better with them when he is sleeping.  When he is awake, he struggles more for his breaths so I’m praying he will learn how to calm himself down while awake and settle into a relaxed breathing pattern.  On the list for tomorrow?…More sprinting and sleeping. 

The fluid from his chest tube on his right side is still draining – fluctuating a bit in the amount so they are “keeping an eye on it”.  I think everyone would be relieved if it just stopped completely.  It remains an issue until it does.

It’s quite late and Rudy is sleeping so I think I’ll hit the hay as well…Sleep tight!

A Mother’s Love

The picture of “a mother’s love” was painted for me many times over this weekend…as I reflected on my monther-in-law’s willingness to take care of my home and children for 6+ weeks, in my mother’s efforts to fly all the way out from Kansas for a mere 48 hours in order to get back before my dad begins his radiation treatments this week, and in the grace with which the Mannings let their little Katie go – peacefully in Vickie’s arms.  All emotionally moving in their own way and all very vivid reminders that what Rudy is embroiled in is serious requiring great sacrifice and vulnerability.  Even now as I sit and watch him labor through an attempt at a 3 hour sprint off the ventilator, I’m struck by the obvious – he is in a fight for his life.  Not to minimize the progress he has made so far, but because my son can’t breathe on his own beyond a 3 hour exercise, it is hard, sometimes, to imagine an existence for Rudy beyond what he has known so far. 

I’ve come to realize that one of my greatest desires, as a mother, is for my kids to be known…to be understood and appreciated for their unique gifts and talents…nothing blesses me more than when others take the time to invest in my kids whether it is their teachers, church leaders, close friends or family…it means so much to me.  The desire for Rudy to be known (even in the isolation of an ICU) is just as strong as with my other kids which is why I’m so grateful for the medical team that genuinely cares for him in so many ways I never could, for the visitors who have witnessed in person how truly soulful the look in his eyes is and for the blog that has allowed us to share Rudy with so many in far away places! 

Thank you for your faithful investment in our family through your constant love, prayers and support during this time.  Sacrifices that are not lost on us!

Oma and Grandma Jo
Oma and Grandma Jo
Trio of Moms
Trio of Moms
Oma-love
Oma-love
"Guess what!  Gma loves you"

Happy 100th Birthday, Uncle Rixie!

Perhaps this is a bit off topic, but if there’s anyone worth making an exception for, it’s Uncle Rixie.  I think there are only two people in the world who can actually claim him as a legitimate uncle, but dozens who claim him as a surrogate uncle, parent or grandfather.  Long story, but when my father came to the US to attend Stanford as a freshman, he was taken under the wing of his Western Civ professor.  Dad became one of many people who learned that Rixie and his wife, Elliott, were very poor at keeping acquaintances, but very good at adoption.  With no children of their own, scores of fortunate people became their family.

I had Rixie’s big day noted on my calendar for some time and without question thought I’d be in the Bay Area with him to celebrate.  But not only do our circumstances make that difficult, but Uncle Rixie’s own health is such that he declined any celebration and isn’t feeling well enough to talk on the phone.  There’s so much good to say about him it’s difficult to know where to start, but anyone who has had the priviledge will understand my need to make mention of him. 

If you’ve lived one hundred years, you remember life before every family had a car or telephone.  You lived through two World Wars and saw 19 different US presidents (starting with Teddy Roosevelt!).  In Uncle Rixie’s case, the 100 years were filled with meaningful service to Stanford University and thousands of students in the classroom and as Dean of Admissions (how do you think I got in?).  While the milestone he’s achieved in his lifespan is impressive, more so are the scores of friends he’s made along the way.  I’m certain I am one of many who lament that we can’t celebrate him en masse today.

So tonight I no longer wish I could be in two places, rather in three.  It’s hard to beat sitting here in Santa Barbara listening to the unbridled laughter of three incredible kids, but I’d give an awful lot if I could have just a few minutes to be with Rudy at UCLA or to sit with Uncle Rixie in his apartment in Palo Alto.  Happy Birthday, Uncle Rixie!  Congratulations and thanks for everything!  I sure would love to work out a way to squeeze in a trip to the Bay Area.  But given the challenges we’re facing I didn’t want this incredible milestone for an incredible man to pass without some mention.

No Surgery!

In the wake of Katie’s passing with grief and much concern for Alan, Vickie and their families, it is hard to know where to go with our own updates about Rudy…so many thoughts and feelings to process and yet, many of you are eager to know what’s going on today…I feel the need to post a more “thoughtful” update but for now let me just say that Rudy’s surgerical procedure has been cancelled.  The doctors had me sign a consent form last night “just in case” but the xrays came back looking good and after the rounds this morning, they decided the procedure wasn’t necessary.  I will share more later and, as always, thank you for your prayers!