Trish, Rudy, Max and Livy made a trip down to UCLA yesterday.  No appointments, no clinics, no emergencies…just a chance to share some love with families who will be spending their Christmas in the CTICU this year.  The memory of our time there two years ago is sacred, profound, and yes, even joyful.  [Remember this, this, and this].  HIPA rules prevent just anyone from waltzing into the ICU to spread holiday cheer, but that’s one door that flies open for Rudy and it was special to see so many of the people who fought so hard for him during his seven months there.  Dr. Robert and Nurse Filma took the little Christmas deliveries and made sure they got delivered to the families of the little fighters on the unit.

The reality of having a critically ill child is that life can be upended at any moment and can feature unplanned returns to the hospital that aren’t sensitive to holidays.  Given the way Rudy’s journey started, we’re very fortunate that this hasn’t been part of our experience.  Being home at Christmas means we get to experience special days like we did today at the Rescue Mission’s Christmas Feast–another moving effort to embrace people who might be having a difficult Christmas of their own.  Here’s Rudy enjoying the sunshine and supervising/greeting people as they came through the gift line:

We’re so grateful that it looks like many of our little buddies will be spending Christmas at home, but for those families that are gearing up for a hospital Christmas, I’m re-posting this little Rudy’s Beat tradition.  May God Bless you all, keep you safe, and bring you home soon!

With Apologies to Clement Clarke Moore

‘Twas the night before Christmas, in the CTICU on 5 East,
A few creatures were stirring, because they never cease;
The fluids were hung by the bedsides with care,
In hopes that all would remain peaceful there;
The children, not “nestled” but comfortable yet,
Saw lots more than sugar-plums thanks to the meds;
Dr. Ryan in his coat, Dr. Andy in clogs,
Kept quiet watch as they checked patient logs;
Far up on the roof there arose quite a clatter,
But they wouldn’t have heard what was the matter.
Nurse Susan at her station would not have noticed,
Her attention on Rudy was lovingly focused.

The flat helipad with its lights flashing on top,
Made landing much easier than most other stops,
The touchdown was simple, but the rest was quite hard,
For patients and visitors with no proxy card,
But this one was different and he knew some tricks,
The card readers and elevators were no match for St. Nick.
He stuffed his sack fuller than he ever had yet,
For scores below worried that he might forget;

To the 5^th Floor through the stairwell he came with a bound,
Right through the alarmed door with nary a sound.
Yes, dressed all in fur from his head to his foot,
But he cleaned himself up because they don’t allow soot.
Into the PICU he walked without ringing,
Quietly as the pumps and the vents did their singing.
His eyes kept on twinkling; his dimples still merry,
But tender concern showed behind that nose like a cherry.
While the nurses’ attention was never averted,
Somehow he slipped into each room unobserved,

He’d given up the pipe as he’s now much the wiser,
And at each door he carefully lathered with the sanitizer.
The belly like jelly still shook only slightly,
As he kept his voice quiet and laughed only lightly;
That wink of his eye and the twist of his head,
Assured the small patients they had nothing to dread;
He spoke soothing words along with his work,
Being careful to turn with nary a jerk,
After carefully laying what he’d brought on the bed,
He’d give a small whisper and a pat on the head;
Without any rush he went door to door,
Making sure he missed no one on the entire floor;

He returned to his sleigh and offered a prayer,
That these little ones wouldn’t be much longer in there,
As he prepared to alight from this special stop,
The children were assured he hadn’t forgot.
So he loudly exclaimed as he drove up into the air,
“Be home next Christmas, and I’ll see you there.”

Thanks for all the notes and comments.  At some point we’ll have to get on a longer “how we’re feeling/what we’re thinking” post in light of the recent developments, but in the meantime the holiday season gives us lots of things to enjoy.  We’ve got some posts coming on the fun we’re having.

I appreciated a Rudy’s Beat fan (thanks, Christie!) who forwarded me this NPR link about a long-term HLHS survivor.  If one hero isn’t enough, you’ll probably recognize a second, Dr. Brian, who gets interviewed below.  The impasse we’re at with Rudy’s condition can give rise to all kinds of questions in our heads.  I’m glad one of them is not whether we’ve got the best team.

A longer post will come in the next day or so, but just wanted to quickly report that Trish and Rudy were discharged late this morning.  Rudy was cranky up until the end; but that changed the moment he got into his car seat.  Suddenly he was all smiles as he looked out the window and made his escape.  It’s OK with us if he hates the hospital–home is much better!  At the same time, we’re so grateful for the UCLA team, the careful attention they pay to Rudy and the encouraging friends they are to us [not to mention the hard-to-find hospital loot they send us off with in good supply ;-)].

Trish will probably wait out the LA traffic for a bit, but we can’t wait to see them.  It was fun to hear Rudy squawking it up in the background when she called me from the car!  I guess the ability to vocalize more is readily evident!