We were all in Goleta today and enjoyed celebrateing Grandpa Dick’s birthday this evening.  We had fun sharing our “favorite memories” and the children wanted to hear Grandpa’s first hand account of what it was like when Moses parted the Red Sea!  Lots of laughter amidst a simple family time together.

 

 

                                                                                                            

 

Back at UCLA, Rudy has had what have come to be the usual ups and downs.  On the “up” side, he’s done well with the wean of the ventilator and spent most of the day comfortably at 32bpm.  His kidney function has come back very well to the point where there’s little concern in this realm.  His blood pressure and most of the other numbers are very good.  On the “down” side, his chest tube fell out again this morning (no you aren’t re-reading a previous entry).  They tend to come out over time and often when the output is low as the pressure holding them in place decreases.  Hoping for the best, we pray that this means there is no more fluid and the cavity will close up like it should.  But Rudy’s history has been otherwise–where things look fine for a few days and then the fluid comes back.  While we would prefer the fluid just take care of itself without needing to do another pleurodesis, we want to move past this once and for all so we’d also be fine with the fluid coming back immediately and making it clear that we should do the procedure.  Above all, please pray for definitive information. 

The other issue impacting this is the fact that they had to cease feeds as Rudy’s stomach appeared to be upset.  Our main concern here is that the fluid on the chest seems to increase when feeds are going, so the fact that they aren’t feeding him could give a false read on the chest fluid.  This presents challenges for the doctors to assess what is actually going on and what course of action to take, so again, we’d be grateful for some clarity.

As you can see in the pic above, Trish was inspired by Olivia’s new look and got a haircut of her own.  “New Year, New You!”  I must say, she’s looking fine!

The Christmas gifts I’ve enjoyed giving the most are the ones I’ve made.  Since I got my workshop set up in the garage this past year, I had hoped to enjoy some of that creative activity leading up to Christmas.  Unfortunately, unforeseen circumstances didn’t leave any time for woodworking, but this morning I tried to exercise some creativity of a different sort.  Haven’t written much poetry since elementary school, so I thought I’d borrow from someone else…

‘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.”

The hospital is quiet, but not empty on Christmas eve.  There are only 3 CTICU patients and the rest of the East PICU has been cleared out and patients consolidated on the West.  Elective surgeries are scaled back during the holidays leaving only the patients who have no choice but to be here.  As lonely as it sounds, we know just about everyone working today and appreciate them deeply so spending Christmas with them isn’t so bad.  We arrived en masse this morning with all of the kids and commandeered use of the room next door, so we’ve got a bedroom and a den.  As most holidays involve sitting around in close quarters with too many people, it’s not really much of a departure.

Rudy continues to do well, but Dr. Kelly is interested in getting a closer look at his chest as there seems to be a blockage on the right lung–perhaps something post-op from the pleurodesis.  So, they will take him downstairs for a CAT scan at some point, but with the holiday staffing we don’t know exactly when that will be.  When they have him there, they’ll also take a look at the left side where they still see a bit of an effusion (fluid) that they’re watching, but not acutely concerned about yet.  His kidneys are functioning smoothly–producing lots of urine (the other kids think our fixation on this is gross), and all the numbers are getting to be exactly where they need to be.  His nutrition is going smoothly thusfar (up to 3ccs of formula per hour) and most importantly, the prealbumin level (which is the key indicator of nutrition) is at 20–right where it needs to be.  Not surprising as from the looks of it, one would suspect he’s sneaking some donuts when we’re not looking (TPN and steroids make one pretty puffy).

So this is our Christmas and, the more I think about it, it’s all very appropriate.  As I’ve shared in a few settings over the past few weeks, we tend to associate Christmas with preparation and organization.  We shop, plan, decorate, dress and clean up.  All this to commemorate an instance that was anything but.  Mary and Joseph had no time to make plans and prepare but found themselves caught in a setting that bordered on deplorable.  A birth in a cold, stinking stable.  A baby placed in a crib that was far from cozy, sterile or hypoallergenic.  No, a manger coated with dried spittle and decaying bits of cud from the livestock that dined there.  Had they even the opportunity for the slightest bit of planning it would have seen them far away from anything like this.  Yet it’s into this dirty setting, populated by frazzled and unprepared people, that God comes bringing life and hope.  And that’s a tremendous comfort to us here in Room 5439 because it means that Christmas will come to us, regardless of how much we’ve prepared for it.  Not to say we haven’t done a bit of planning, but our primary wish was to be together as a family.  With this in place, we’ll let the celebrating begin.

I called down this morning to check on Rudy and Nurse Rosella reported that the progress continues.  The team has backed off on some of the diuretics, so his kidney output has lessened a bit (15-20cc per hour) but that’s still acceptable and they’d like to see what kind of progress he makes without major meds.  His tube feed was turned up to 2cc but the team is watching that very closely, so prayer for that would be appreciated.  The BEST news is that his chest Xray looked very clear this morning so the concern about any fluid there has lessened.  After the twists and turns last week, progress like this lifts our spirits.

So, the cars are packed and we’re ready for our Christmas celebration with Rudy.  We’ll stay around Santa Barbara until the afternoon as we’re having our annual Christmas feast.  As I write this in my office, the building is a hive of activity as we get ready for about 300 guests–a great way to start off our Christmas.

Despite the fact that we weren’t with Rudy today, we kept abreast of what was going on at the CTICU over the phone with Dr. Robert, Dr. Abel and Nurse Victoria.  Today was a day of gradual progress.  The kidneys continue to function and the right numbers are going down.  The team is trying to dial in the right levels of diuretics as they found they can’t back them off too far or the urine output drops.  Now that the chest tubes are out, the plan is to increase nutrition so that he’ll be strong enough to make progress on his breathing. 

The team started stomach feeds again, so that’s another thing to pray for–we want Rudy to be able to handle these well.  They’ve also started a respiratory treatment (the name escapes me now) four times a day which pushes air into the lungs at a rapid rate to expand them.  We’re hoping it will all help him when it comes time to make progress on the ventilator without lung collapses and the other setbacks that can happen.

We’re so grateful for the last couple days as last week had some really difficult times.  We’d love God’s favor on Rudy so he can put a lot of these challenges behind him.  For our own encouragement, it would be nice to have him sail through an obstacle or two.  He tends to meander or take a path with more twists and turns.  Unfortunately, this journey is rife with pitfalls so it would be a great Chirstmas present to dodge some of the ones we know are out there this week.  We’d appreciate your prayers and ask that you pray with us through this time:

1.  That Rudy’s chest would remain clear of fluid; there was a trace amount on the left side of his Xray today which the team will watch closely.

2.  That his kidney function would continue to remain stable and improve.

3.  That his stomach would process nutrition well and allow him to build strength.

4.  That he would be able to make progress toward breathing on his own.

As always, we are so grateful for you journeying with us.  As unique as this Christmas will be for us, one of the things that will remain in our minds is the faithful company of friends, far and near, that surround us.  Thanks for being part of this.  Tomorrow we’ll head down with the kids to be with Rudy until late on the 25th.  In case we don’t post with as much frequency, know that we have days of family and fun planned which we’re hoping to savor.  We pray you’ll be doing the same.

I’m packed up and ready to leave Rudy now.  Good progress continues–he’s put out 15ccs each of the last 3 hrs so the team has re-started him on TPN (IV nutrition) since they can now increase the number of ccs going in without being concerned about what’s going out.  Please continue to pray for kidney function as 30ccs is where it should be.  Then they’ll be able to load on the nutrition so he can gain strength and work on breathing in earnest.  It’s always hard to leave him, but much easier to do on an upswing.  We’ll be phoning in regularly to get updates on his status and will post accordingly.  It’s a clear day and I should be hitting the ocean just in time for a pretty winter sunset…