We trust you’re enjoying the lull between holidays too! Joy to all!!
We trust you’re enjoying the lull between holidays too! Joy to all!!
Well, it’s 11pm and its time to wind things down here in the Geyling household. Rudy finally fell asleep after a very long day with no naps and the big kids are camping out in Max’s room watching “A Christmas Story”. Our day started out this morning with donuts, caroling and zany Christmas games with the women of Bethel House and ended with the Christmas Eve service at our church. Once again, we stop in the midst of all the excitement and reflect on all we have for which we are thankful…you certainly make that list! Merry Christmas dear friends and family…we wish you the very best this holiday weekend and the peace of God’s presence in all that you do. Christmas blessings…
Okay, so there really isn’t a good segue after that picture but I did want to share one last Christmas tradition. Christmastime gives me a few more opportunities than usual to sing at church and Rescue Mission events with my friend Darlene. This year we decided to make a simple recording of a few tracks (Thanks Jeremy and Jake!). Here’s our favorite…
Sleep in heavenly peace everyone!
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 5th 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.”
Leave it to Rudy, but we’ve got another peculiar issue to add to the list. There hasn’t been much written about RSA, but our diagnosis is certain and confirmed. At first we mistook the symptoms of RSA as a coincidence…
But we watched him closely and picked up an undeniable trend…
It doesn’t just happen when he’s lying down. RSA can flare up when he’s seated…
He’s been known to have an RSA outbreak in public places…like Wendy’s.
That’s right, we’re talking about RSA…Right Sock Aversion. We’ve watched Rudy closely and have repeatedly seen this pattern. Never the left sock (which would be LSA) or both socks (BSA–Bi-lateral Sock aversion). Why always just the right? Perhaps some of the medical geniuses who follow Rudy might have a theory on this, but for now we’ll just start a low-profile RSA Awareness campaign.
RSA attacks seem to start like this…
Then the behavior escalates…
And pretty soon, you’ll have that right foot all happy and free. Apparently once you’ve got the right foot out, there’s no need to bother with the left. You can just kick back…
Probably not as significant as some of the other mysteries we’re trying to solve, but it does get one curious. Stay tuned for the RSA Research telethon…
…but I’m not sure Rudy is too keen on his existence!
Not even the big sibs were able to comfort Rudy…Santa wasn’t threatening until we made Rudy sit on his lap! Ha (Bless his heart)
Although Rolf and I continue to battle the temptation to dwell on the heartache of recent disappointments where Rudy is concerned, we have had a ton of fun distractions including this little trip to see Santa and Oma’s visit this week. I even managed to pull off a jewelry open house at the last minute yesterday and enjoyed a nice turn out…connecting with friends I haven’t seen for a while. The hustle & bustle continues this next week with another GVJH band concert, caroling with the Girl Scouts, Rescue Mission staff party, visits with “out-of-town” friends and more…treasuring it all.
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.
Ugh, just when we thought we were on the verge of some real progress, we got the disappointing news today that Rudy did NOT pass the sleep study! Dr. Pornchai (UCLA Pulmonologist) called this afternoon with the news. Apparently, there was no question about it…shortly after plugging the trach while sleeping, his heartrate spiked and his breathing became labored. (Where was I?) It’s clear he is still dependent on the trach and so we need to stop the decannulation process and wait to see Dr. Pornchai again at our next appointment in late January. We were pretty convinced he was ready to pull the darn thing so today’s news sure feels like a setback. What’s most depressing is the thought of having to reorder trach supplies with CrApria…I’ll have to make that call tomorrow.
We have a couple of questions for Dr. Shapiro (UCLA ENT) and will try to make contact with her tomorrow as well. Now that decannulation is off the table, I guess we’ll move on to plan C (plan A being “heart surgery”, plan B being “decannulation”…) which is working on Rudy’ s food aversion and getting him to eat real food. This is a long, tedious process but the next “major milestone” we’ve been waiting to conquer. Though minor compared to heart surgery or decannulaton, the pressure is on at this point because if he doesn’t learn to eat and eventually eliminate the need for the feeding tube, I think I’ll start to pull my hair out or it may just start falling out on its own. As seems to be our MO this fall, our challenge in the coming weeks will be to stay focused and not dwell in the disappointment. We’ll keep you posted…As always, thank you for praying!