Happy 13-week Birthday!

13 weeks old!
13 weeks old!

Well, here we are on the eve of yet another holiday.  Olivia called earlier to ask me where we keep balloons!  It sounds like quite a New Year’s Eve celebration is being prepped at home in Santa Barbara.  Rudy and I are gearing up for a big bash here in the CTICU.  I walked to the drugstore yesterday to stock up on some yummy snack foods to share as we await the countdown to the new year tonight.  It has been a full day today with a handful of patients in our unit either being discharged or sent to the floor so we’re down to 3 patients again…(the other two are different from the other two  of last week).  The CTICU sure has been in a flurry of activity this past week with what feels like a revolving door of patients in and out…and then there is Rudy who has very quietly sat back and made his slow but somewhat measurable progress. 

Today was much like yesterday…he spiked a fever in the morning and battled a fluctuating blood pressure but by afternoon, his fever broke and his numbers were back where they should be.  Today’s chest x-ray detected a small amount of fluid outside the left lung but still not enough to make a concrete decision about the pleurodesis at this point.  His red blood cell count was down so he needed another blood transfusion and one of his picc lines needed to be replaced.  I enjoyed helping Nurse Jenny give Rudy a bath.  He now has a fresh gown and fresh linens…it’s a good thing, too, because Rudy is going to have a long line of nurses wanting their first kiss of the new year to be with him!  Dr. Mary, though, has already reserved her kiss to be the very first at the stroke of midnight!  

It’s so hard to look much past tomorrow…hard to imagine what 2009 will bring but one thing is for sure – Rudy’s first New Year celebration will be filled with lots of love, an ever-growing fan club, and a never-ceasing hope for a future nestled in the hands of God…a comforting reality in the midst of all the uncertainty.

Back in L.A.

Shortly after Rolf headed off to work this morning, I left Grandma Jo and Grandpa Dick in charge and made my way back down to L.A. to spend the rest of the week with Rudy.  It has been a good day catching up with staff, organizing the room (my OCD needs an outlet) and, most of all, sittting with Rudy.  When I arrived at noon, Rudy was awake and hypertensive.  He had spiked a fever earlier in the day and it was clear he wasn’t comfortable…his blood pressure was all over the place and he was fitful when he was awake but as soon as his temperature broke, all his numbers stabilized and were much more consistent.  Rudy is getting quite a reputation as one who DOES NOT like to be messed with!  He is getting increasingly sensitive to stimulus of any kind so it was a treat to have moments today when he was alert, looking straight at me and seemingly comfortable as I held his little head and feet.  I tried to donate some more blood for him today but I got rejected this time around because my blood tested low in iron.  I was given the assignment to eat hamburgers the next couple of days and we’ll try again on Friday.  Given my addiction to fast food, I’ll have no problem with the hamburger consumption!  Ha ha

Except for the fever and fluctuating blood pressure, Rudy is holding steady.  His chest x-ray from this morning showed “some” fluid  on the right side which they will watch closely and nothing on the left side!  This could change but, for now, they are planning NOT to do the pleurodesis on the left side – wouldn’t that be wonderful!?!  He is also tolerating the wean from the ventilator well…he is down to 28 bpm and it will soon be dialed down to 26 bpm.  The plan is to continue to dial it down 2 bpm every 12 hours as long as he tolerates it.  I can’t help but wonder if Rudy has been waiting to engage in a healing breakthrough especially for the New Year!  2009 will soon be upon us – let the breakthrough commence!!!!!

Goodnight for now…I’ll update again after tomorrow’s x-ray!  Thank you for your prayers…we are strengthened in them!!

Happy Birthday, Grandpa Dick!!

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.

gpa-and-kids

 

 

                                                                                                             gma-and-rolfgpa-r-t

 

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!

Sunday with Livy and Rudy.

After our two days at home, Livy and I came down together to spend the day with Rudy.  She still gets distracted by her new haircut every so often and tosses her head or stares at her reflection a bit.  More than once she’s come up to ask, “Daddy, does my hair look cute?” with all the rhetorical uncertainty of one asking if there’s going to be gravity tomorrow.  She’s endeared herself to the nurses and that’s resulted in various new experiences:  helping Nurse Denise with labels, Uno with Nurse Katrina and making marshmallow dradles and playing dradle with Nurse Aliza.  Turns out she’s a shark and won all the chocolate.

In the middle of it all, Rudy is continuing according to his own timeline.  A highlight today is how alert he’s been.  He’s been awake for long stretches and looking calmly around the room at us with his big eyes.  The team has been hopeful that he would be able to regulate his own blood pressure without medication and he’s done fairly well with that.  It varies significantly when he’s awake vs. asleep,  but it hasn’t been high enough for any period of time that has led them to medicate.

The primary concern is the fluid on Rudy’s left lung.  The right side has responded very well to pleurodesis and, as Dr. Brian prepared us for the likelihood that he might have to do the left, it’s looking more and more that way.  The fluid output from the left side increases significantly when he’s being fed–since they cut off the feeds yesterday, it’s subsided to a very small amount.  There’s some possibility that, once it all drains, that the tissue on the left side could all pull together and put an end to this, but Rudy’s history wouldn’t make us all too confident in that.  Please pray specifically for resolution on this issue this week–either that it would go away completely on it’s own or that Brian would be able to address it completely with pleurodesis on Friday.

As I’ve said before, this whole situation is puzzling to the team and it causes them to wonder if Rudy might have some kind of anomaly in his lymphatic system.  This would not be entirely uncommon, considering the anomaly with his heart nearby that brought us here.  Should pleurodesis not address the fluid situation or if it ends up simply diverting it to someplace else in the body, there would not be many options to deal with this.  What is troubling  is that, apart from this, Rudy is so strong on all other fronts.  His heart repair is very strong, his hematology is right where it needs to be and his kidneys have shown they can bounce back.  The remaining hurdles of his breathing and his feeding might take time ,but that is something the team knows how to work on.  What’s happening with Rudy’s lymphatic system is very uncommon, among our team and the many colleagues they have consulted with around the country, but we need to get past it so please pray that we would be able to get past this this week.

Tomorrow we’re looking forward to being back in Santa Barbara to celebrate Grandpa Dick’s birthday together and then Trish will assume duty back here on Tuesday.  We pray that your are all savoring your holidays celebrations and vacations.

Christmas at home…

Our Christmas wish for two lazy days at home came true–well maybe not altogether “lazy” as two of the activities included putting together a trampoline (thanks, Oma and Opa, for a Christmas gift that’s already seen hours of laughter) and weeding the rose bed that’s been bugging me for weeks now (but I haven’t been home with enough daylight hours to do anything about it).  So, nice to have some therapeutic activity and, as I know some will read with concern (like you, Jane), my back feels pretty good after all is said and done.

As for Rudy, he’s received the same attention and doting care he’s grown accustomed to.  We’ve had regular contact with Nurse Katrina and Dr. Robert.  He’s having some of the usual hiccups–unfortunately the chest tube on the left has continued to put out significant amounts of fluid (70cc daily) that now has a high percentage of chyle, so we may be seeing chylothorax on the left side which might require pleurodesis on that side.  Perhaps a bit too early to see what course Brian will want to take, but he did prepare us for this possibility.  Dr. Robert became concerned today about his stomach and how it was processing nutrition so he halted the tube feeds.  Depending on what an Xray shows tomorrow morning, they may start again–they always want to be pre-emptive and never get to where they’re chasing Rudy.  His blood pressure is being watched, but it’s acceptable.  It’s been a bit on the high side lately, but Robert wants to use as little medicine as possible in order not to stress the kidneys.  Robert also halted the vent wean today as he doesn’t want to throw too much at Rudy at once, so the rate is about 35 bpm and Rudy’s comfortable there.  They’ll decide what fronts they want to move on tomorrow, breathing and feeding-wise.

We are blessed to have Grandpa Dick and Grandma Jo with us.  Trish’s Dad finished his 6 weeks of radiation treatments on Wednesday and, on Thursday, her parents boarded a plane bound for LAX!  They plan to stay a couple of weeks before Dick’s oral chemotherapy begins.  We are so thankful they were able to come and celebrate a late Christmas with us here at home.  The big event today was Olivia’s first haircut!  After resisting the idea for several months, she decided yesterday that she was ready and that she wanted to donate her hair to “Locks of Love”.  Our little princess was very excited about going to the salon and was quite the little lady sitting patiently as the stylist clipped away.  We’ll miss her trademark long locks but the end result is pretty adorable. 

Thank you for your continued prayers!  It is hard to believe that we are coming to the end of 2008 with our Rudy still at UCLA and still with no clear indication of when we’ll bring him home.  Prayers for continued endurance and optimism in addition to full recovery for Rudy are GREATLY appreciated. 

Grandpa Dick meets Rudy 12-25-08
Grandpa Dick meets Rudy 12-25-08

 

 

 

 

Grandma Jo and Grandpa Dick
Grandma Jo and Grandpa Dick
Livy and Grandpa Dick pre-haircut
Livy and Grandpa Dick pre-haircut
Livy's Lock of Love
Livy's Lock of Love
The end result
The end result

Merry Christmas…

from our family to yours!!!

December 2008
December 2008

 

It’s been a great Christmas so far here in our unique environs.  Rudy has been stable.  We were glad to find out that what fluid is coming from the left chest tube is only 8% chylous so perhaps not another issue of chylothorax.  He’s breathing much better since the fluid came off, so Dr. Robert might just start to slowly wean the ventilator tonight as his nutrition looks good.  The kids discovered there had been a visitor overnight, so the day started with presents and fun.  Since then, the day has been full: fun with Nurse Kelly, Nurse Aliza, Drs. Abel and Robert; visits from friends, firefighters and (yet another) Santa.  Things are just getting started as Trish is set to go pick up Grandma and Grandpa at LAX and, after they have a chance to visit with Rudy, we’ll all head back home for a couple of days enjoying a lazy Christmas at home.

I’m not sure any more words could do our Christmas celebration justice…so here is a pictorial diary of the past couple of days…

volleyball-1

What would a Christmas Eve in the CTICU be without a traditional game of “udderball”.  All you need is a surgical glove, an extension cord and an empty room with a very expensive ICU rig to serve as stantions. 

 

 

 

 

 

 

xmas-carols-1

Hot Chocolate, the Christmas Story and Christmas Carols at Rudy’s bedside – (Christmas Eve 2008)

 

 

 

Christmas Morning in the CTICU
Christmas Morning in the CTICU
Baby's 1st Christmas
Baby's 1st Christmas
Rudy's view of the "yule log"
Rudy's view of the "yule log"
Atari with Dr. Abel
Atari with Dr. Abel
Play time!
Play time!
Beverly Hills Firemen!
Beverly Hills Firemen!
Rudy at 12 weeks and one day!
Rudy at 12 weeks and one day!

With apologies to Clement Clarke Moore…

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 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.”