Rudy’s first Christmas Eve at home started off with a morning visit with our friends at Bethel House…donuts, a vicious game of “Christmas Basket”, ornament crafts and Christmas carols…we couldn’t have fit anything else in!!!!
A morning full of fun...
We were home long enough for the boys to take care of the chickens they are sitting for vacationing neighbors and for a surprise visit from Nurse Aliza and her family in Santa Barbara for the day…such a fun treat!!
Next, we were off to the candlelight service at church that included “O Holy Night” and a little time with Rayme, Brett and Emma…Rudy liked his snuggle time with Rayme.
Big hugs from Rayme and smiles from Brett...
We were blessed to be with the Elliotts but there was no doubt that Logan was profoundly missed...
Our day ended at home with beef stew, Martinellis and a favorite Christmas movie.
Blessed to be home but missing family far away...
The last we checked on the NORAD website, Santa was in Boise, Idaho…it’s time we went off to bed before Santa arrives…Rudy beat us to it…
We started off our celebration this week by going back to the hospital. We had fun sharing Christmas cheer with many of the doctors and nurses that were a part of our holiday last year.
Saying “Merry Christmas” to a handful of Rudy’s angels!
It was affirming to get so many positive comments on how good Rudy looked. Compared to the little guy we took home from the hospital, he was about twice the weight, alert and smiling with good color. Some just couldn’t resist a more clinical assessment:
An impromptu listen by Dr. Dan...
In just a few hours at the hospital, our family reminisced about some of the things we did to remain sane there for seven months. We didn’t have time to take over a room for a game of udderball, race down deserted hallways in wheelchairs, or spin around in nurses’ chairs until we were dizzy. ..too many people around for that. But you can almost always have a good “Elevator Dance Party”.
Wait for an elevator of your own.
Play it cool.
Get in the elevator like normal, well-behaved people.
Until the door closes…
Then the party begins!
DANCE! DANCE! DANCE!
Extra points for extra abandon, but you can’t get too carried away…
You never know when the door might open…
True experts learn how to time things just right…
Dancing right up until that last second.
When the door opens.
No one would ever suspect it...
Rudy couldn’t dance along with us. He just looked on from the stoller and entertained second thoughts of whether he was better off staying with his nurse friends.
Some members of the family thought it never would come, but Christmas break is here. Unfortunately, Daddy’s Christmas break doesn’t run the full two weeks so I headed off this morning with the unmistakeable feeling of missing out on something–there’s a great deal of holiday fun to be had with the kids at home today.
Not to say that I can’t claim to have already had a hand in the holiday fun…because I came up with the MOST SUPER-FUN holiday decoration. In fact, I’ve been hesitant to show it because once you know of it, it will make your own celebration feel so incomplete and leave unrequiteable yearning in your heart.
OK.
Without further ado….
I present to you…
The PuleTide (TM) advent wreath!
Eat your heart out, Bellagio! (pretty proud of my winter roses too!)
It took some tweaking to get things working right. I anticipated accumulation of rain water so I drilled holes in the candleholders to let it drain (but this didn’t prevent the wicks from getting saturated). A larger struggle with buoyancy temporarily made it the first sub-aquatic holiday decoration, but switching from an inner-tube (prone to leaks) to foam rectified that situation. My camera skills aren’t good enough to capture it’s full nightime splendor, but I still think it conveys what your celebration will be lacking without a PuleTide (TM) advent wreath.
And to think–this is Rudy’s first Christmas home, so he’ll probably just take the brilliance of the PuleTide advent wreath for granted!
Last year’s Christmas at UCLA certainly taught us a lesson about not taking things for granted. We’ve enjoyed being together, decorating, advent celebrations at church and the anticipation of everyone being together under one roof. In the midst of this, it was surprising to hear Olivia say how much she was going to miss Christmas at the hospital with all the doctors and nurses. As her older brothers readily agreed, we decided to plan a drive down there tomorrow to check in on our friends and bring some cheer to the families who will be spending this year there. Keep an eye out for us, UCLA friends!
Last year’s Christmas in the ICU made an indelible impact on us as it shed new light for us on the incarnation–that God’s son came into the world in all it’s chaos and uncertainty. In the midst of stress and anguish, there can be beauty and joy because of His presence. We’re so glad for that.
Last year’s circumstances didn’t leave me much room to unleash my creativity on things such as the PuleTide advent wreath. In an attempt to pass the hours in Rudy’s room, some of you might remember I worked out a new take on a familiar Christmas classic. I read it over again this weekend and it brought forth tears of gratitude and empathy for the kids and families that will spend this Christmas in the hospital. In honor of them, I’m reposting it here again. Even if you aren’t spending Christmas in a place of your chosing, may you find peace, comfort and hope there.
‘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.”
A big part of what makes life with a condition such as HLHS bearable are the people who come alongside. There are plenty of frustrations, disappointment and tears–let’s face it, the whole circumstance is regrettable–but, within these challenging circumstances one has to keep focused on the blessings and touches of grace. There are so many people who have lightened the load and, sometimes even with just the smallest act, have made life brighter and reaffirmed to us that we aren’t alone in this. I don’t think we could ever mention all of you, but there’s two that struck me recently.
Mike, Rudy's coverage "Champion"
This handsome guy is Mike Champion, our insurance guy. His life’s work revolves around Risk Adjustment Factors, Provider Networks, deductibles and disclaimers…and somehow he’s not only sociable, but upbeat and positive most every time I see him. Part of dealing with a critical health matter is dealing with insurance, billing and the like. That can be stressful and unpleasant, but Trish and I have often voiced our gratitude for the medical coverage we do have. I could never have foreseen our personal circumstances back when I was working with Mike to set up our employee benefits plan. As we’ve since watched enough families not only have to deal with the realities of having a sick child but also have to contend with incredible financial stress, we’re so grateful for Mike’s ability to think ahead and make sure we had the right things in place. He and his able sidekick, Betty, have also proven to be very effective advocates for the times when we have one of those statements that just won’t get straightened out. Mike was able to tear himself away from the spreadsheets he loves so much recently to come over and meet Rudy. So grateful for heros and friends who do so much behind the scenes.
Next up, there’s our neighbor, Janelle, who also happens to be a hospice nurse. Whether she likes it or not, she’s one of our home health care consultants. Recently, she also proved very adept at resource procurement. You’ll recall my post a few months back about the innovation of Rolf’s Wonder Humidifier. You’ll recall that my quest for invention was driven largely by an aversion of having to deal with our home health provider (crApria–forgive me) as requests like this involve inordinate amounts of time, phone trees, faxes they “never got”, and shipments of the wrong thing.
Well, Janelle was taking care of a patient recently when a crApria driver showed up with a delivery of respiratory items. On behalf of Rudy, she displayed her trademark charm and persistence and went to work on the driver. Turns out he had the bubble humidifier we had been longing for on his truck–(who’d a thunk?–those huge trucks they drive around in are actually stocked with commonly required home medical supplies.) We’re not asking too many questions about how the usual demands for paperwork were bypassed, but I’m keeping Janelle’s number handy. Maybe she’s good at getting tables at famous restaurants or prime seats at sporting events.
I confess there’s some pride that’s keeping me from taking Rolf’s Wonder Humidifier offline, but I guess it’s good to have the actual part we’re supposed to have on hand. Thanks, Janelle!
Janelle presents Rudy with the hard-to-find $4 plastic gizmo
They say it never rains in southern California, so it was a perfect weekend for Livy to go out and play with her hula hoop!
And what better day for Max to build a bike track on the cul de sac and ride to his heart’s content!
Livy came prepared just in case the weather changed
We’re working on proper umbrella handling technique with her as it seemed to be in this position more often than over her head.
Astute viewers will notice that Wilson is missing from these photographs; proof once again that he’s smarter than all of us and knows that the best place to be on a rainy weekend is inside with a book. And everyone can rest easy that Rudy was with him–warm and cozy inside the house having a lazy day.
Even though we’ve been home a lot longer than we imagined, the 28 weekends in the hospital are still fresh enough in memory that the simple fun found in a weekend at home isn’t lost on us. Stay warm and dry!
Lots of smiles!!! We'll all be home for Christmas!
Yesterday’s appointment with Dr. Harake was full of smiles as Rudy’s echo, once again, looked solid and his O2 sats registered at 85%! (Rudy always has high sats in the cardiologist’s office…they must pump extra O2 through the office air vent system or something) Yesterday’s appointment also marked our last scheduled doctor appointment before Christmas which means Rudy’s singing “I’ll be home for Christmas…” and I’m looking forward to a respite from medical offices for a couple of weeks. I did, however, look ahead to my January calendar and realized the week of the 5th has an appointment each day of that week including a trip to UCLA to see the pulmonologist! Oh well, that’s next year…we’ll hit 2010 running! Ha 🙂 You know what they say…”New year, new out-of-pocket maximum!”
After talking with the team at UCLA, Dr. Harake feels our next step is to schedule a heart cath for Rudy in mid-January which will give everyone involved detailed information on which to base their decisions regarding the Glenn. Rolf and I feel great about this plan and although the heart catheterization is an invasive procedure, we value deeply the information gained from it and appreciate the team taking measures to be as informed as possible before opening our little man up again.
We’re still having to suction Rudy pretty regularly…I’m wondering now if it’s not due to some bug as no other symptoms have surfaced but rather maybe because of changes in our weather (thicker marine layer, cooler temps at night) and also maybe because he is simply more active these days…awake for longer stretches of time and quite the vigorous kicker! Rudy received his 2nd H1N1 vaccination dose this week so I believe he is well protected from the flu now…the only vaccination he hasn’t been able to get yet is the one for RSV. His docs here in town hoped to start the 5 dose vaccination back in October but because of a hiccup in the authorization process, he still hasn’t gotten it! This was of concern to Dr. Harake and Dr. Abbott at this week’s appointments so superstar nurse Melody got on all the parties involved and it will hopefully be available the middle of next week. (Oops, I guess we do have a quick dr. visit next week afterall). It will be a relief to have that vaccination started as Dr. Harake has seen RSV undo in other patients the kind of progress Rudy has made…a foe Rudy just doesn’t have the reserve to fight at this point. So, we continue to pray diligently for a covering of protection for Rudy…may he be our spiritual “boy in the plastic bubble” until we get past the winter season.
Speaking of superstars, Nurse Elaine from Dr. Pornchai’s (UCLA pulmonologist) office has worked MANY hours on Rudy’s behalf trying to get a prescription for trach supplies filled by our friends at APRIA. Rolf and I have purposed to not use Rudysbeat as a laundry list of complaints and rants and thankfully, there has been very little about which to complain in our journey but the lack of follow through and chronic mistakes made by APRIA has gotten to the point where we’re asking oursleves “Are we on candid camera?”. If I were famous, I honestly would expect Ashton to pop out of the next APRIA delivery truck screaming “you’ve been punk’d man!! The prescription was actually originally written back in April by Rudy’s ENT doc, followed up by another prescription in July from his pediatrician and then in October by Dr. Pornchai!!! And, seriously, we’re not talking about random, obscure items here. Well, EUREKA!! This week we received a delivery from APRIA that included the HME trach filter we’ve been waiting for since April. I emailed nurse Elaine right away to tell her the good news and ask for specifics on how and when to use the filter, etc. “How long does the filter last?”, I wrote. “Filter?”, she responded, “Isn’t it ‘filterS’. You should use one filter a day…they should have sent you 30 – a month’s supply!”. OH MAN…another call to our helpful friends at (cr)APRIA!!!
As a result, Rudy has a unique Christmas list for Santa this year…with Apria’s current success rate at actually getting something right where Rudy is concerned, I have more faith in there really being a Santa Claus who keeps a well-stocked supply of medical equipment and supplies next to the warehouses of toys.
RUDY’s CHRISTMAS WISHLIST
1. A big, red ball 8fr red robinson catheters
2. A cuddly teddy bear sheets of pink poly-mem Quadrafoam
And holiday haircuts are checked off the “to do” list…
It’s time to celebrate!! The presence of Jesus in the life of our family has not been more apparent or meaningful to us than in the past year and a half and we are particularly grateful to be starting this advent season home together under one roof among the sights, sounds and smells of the season that are familiar and comfortable. It’s fun for all of us to watch Rudy experience Christmas at home for the first time…he has an army of nutcrackers watching over him on the shelf above his day crib that he can’t keep his eyes off of…and the bright lights of the Christmas tree are equally mesmerizing. All the festivities surrounding Christmas may be new to Rudy but I think he already gets the reason behind the season. In part, because I think his guardian angels must have filled him in. I might have shared this story before but about this time last year, Rolf and I transitioned to taking turns at Rudy’s bedside. I would be at UCLA Mon.-Fri. and Rolf would be with Rudy on Saturdays and Sundays. I remember being heartbroken on Fridays when I had to leave Rudy by himself until Daddy arrived early Saturday morning. To make it a little easier on myself, I envisioned Rudy’s room filled with an army of angels when I left on Friday and when I returned on Monday, I’d ask him about the stories the angels told him…”Did they tell you about Noah and his crazy high sea adventures?…Or about Joseph and his coat of many beautiful colors?…Surely they told you about how Jesus came to earth as a little baby just like you?…Or how he grew and performed many miracles just as He’s doing in you right now!”. I’m sure Rudy’s angels kept him entertained with all kinds of wonderful stories all leading to the same message…”Jesus loves you Rudy”.
The other reason I believe Rudy “gets it” this season is because I think a baby like Rudy doesn’t go through a journey like this without a visit or two from the big guy himself! How many times did Jesus come to bring comfort or, on some days, physical life itself through the care-givers and special visitors that were put in Rudy’s path…countless times, I imagine, which is why I believe Rudy is very familiar with Jesus…intimately aware of the miracle of His presence. Rudy may not be old enough to articulate it but he is LIVING it and that is my prayer for this Christmas season…that all the joys of the season be deeply rooted in the knowlege that Christ’s presence brings hope, miracles, life, comfort and peace to a weary heart and that by embracing that reality, the weary heart is transformed! That said, Blessed Advent dear ones! Jesus loves you too! 🙂
Joy, Joy, Joy…
P.S. Rudy turned 14 months old yesterday which means he has been home for 7 months–the same amount of time he was in the hospital!!! Considering some wondered whether or not we could have him home for six weeks, this is remarkable. JOY, JOY, JOY
Now, I know my thoughts on Thanksgiving Eve should center on all the wonderful things for which I’m thankful but, I admit, all I can think about is “retail”. I just saw on television that Kohls is opening at 4am on Friday…4 AM!!!! Wow! I do love to shop but THAT is commitment. I’m actually not a Black Friday shopper…I got up early several years ago to experience the festive hustle and bustle of the day and returned home 45 minutes later in tears after witnessing a mob of crazed shoppers literally trampling people in a race for some deal…seriously out of balance.
My enthusiasm for shopping has actually waned since moving to the Santa Barbara area. As perfect as our community is on so many levels, shopping venues are limited. Believe it or not, we don’t have a WalMart (yes, it may not be politically correct, but I am an unashamed WalMart shopper) OR a Target! (I KNOW! I can hear the collective gasp from you all!!) Oh, I suppose it’s for the best in the long run but there are those days when I long for that therapeutic trip to Home Goods 🙂 Well, it was one of those days shortly after we brought Rudy home from the hospital when I wandered into our Tiffany & Co. (to window shop…really!) thrilled to finally be “out and about” with Rudy in tow…I must have been pretty excited to show off our precious one as well because I gave sales manager Chelsea a pretty detailed account of Rudy’s journey when she gushed over how cute he was. Ha She was sweet to show interest in Rudy so I gave her the blog address and off I went.
Fast forward 5 months…”Mom, there’s a man in a suit holding a bag in the front yard and he wants to talk with you” I heard one of the kids yell from the back door. “Rolf will take care of it” I said to myself thinking he was a door-to-door salesman of some kind but a couple of minutes later I hear, “Uh, Trish, there’s someone here to see you”. Confused, I walked to the front door to find a man in a suit holding NOT JUST ANY BAG…a trademark blue TIFFANY bag. I shot a “what are you up to?” look at Rolf but it was clear he had no clue what was going on. Our mysterious visitor quickly identified himself as a Tiffany & Co. associate who stopped by on his way home from work to deliver a gift on behalf of the store!!!! He’s WHO?…from WHERE?…and WHY? I was so excited when (my new BFF) Paul handed me the bag you would have thought I was accepting a Publisher’s Clearing House check from Ed McMahon! Paul added that he and his co-workers had been following RudysBeat and how pleased he was to meet Rudy in the flesh! Equally touching was the note that accompanied the bag…”Dear Trish, You and Rudy left such a great impression on me and the entire staff here at Tiffany & Co. Thank you for sharing your wonderful story with us and we hope that you and Rudy are in good spirits. I know you are heading back to UCLA soon so I thought this “Courage” pendant would be appropriate for you to have on behalf of Tiffany & Co. La Cumbre Plaza….Sincerely, Chelsea V.” (So sweet!)
Fast forward another month…We ran into Chelsea and her family at a local eatery when she told me to stop by the store because they had a gift waiting for Rudy…from the Tiffany & C0. LAS VEGAS BELLAGIO team!!!! WHO?…from WHERE? Again, I was blown away!!! Sure enough, the Bellagio team had been following Rudy’s story as well and sent him a beautiful Tiffany football piggy bank with a card addressed to: Our Inspiration Little Rudy! (Super sweet!)
Okay, so my little pre-Thanksgiving story isn’t O Henry’s Gift of the Magi but it is a fun and unexpected (and MUCH appreciated) reminder that Rudy is known, loved and shown extravagance not because he can give anything in return but simply for being himself AND that the kindness of strangers goes a LONG way in bringing encouragement and lifting heavy hearts…
With Chelsea at Tiffany & Co.
I pulled out a stash of papers from Rudy’s files this week…an 11-page, single-spaced list of people to whom we’ve written thank you notes on Rudy’s behalf this past year…a list of kindnesses from both strangers and those close to our hearts…a pretty remarkable list of some remarkable people for which we are forever and deeply grateful. Happy Thanksgiving dear Friends of Rudy! May this holiday season be marked by abundant joy, extravagant love and “fear-eliminating” hope for us all!
The kids and I have been flying solo this weekend with Rolf in Austin helping his parents prepare for their upcoming move. I’ve taken full advantage of our big cat being gone by making more than one trip through a drive-thru and playing Christmas music throughout the whole house thanks to SIRIUS satellite radio. Rolf has this odd conviction that Christmas music shouldn’t be played before Thanksgiving…and, unfortunately, the boys are following in his footsteps as they have accused me of “seasonal interference” all weekend! I don’t care though…I’m still bigger than they are and I’m bullying my way to premature Christmas spirit. Livy seems indifferent and Rudy smiles at me everytime I pass by singing and dancing along to the festive tunes.
Thankfully we’ve had an uneventful weekend on the Rudy-front…no drama, no emergencies. The big kids have kept busy with playdates, house chores, creative play and movies. It has been a fun weekend but I know everyone is eager to see daddy when he returns tomorrow.
Here’s some of the fun on film…
Creative fun with Max and Livy
All you Lego enthusiasts will be interested in hearing about the Bionicle sorting session we had this weekend…I asked the boys to sort through them all making sure all the pieces were in the right cannister complete with instruction booklets, etc and we were all amazed to find that their collection consists of OVER 60 Bionicles…insane!!!!! They narrowed it down to the 5 or 6 nearest and dearest and the rest are showing up on CraigsList soon! Ha Ha
We were glad to get the call from our family doctor that they had secured H1N1 vaccine for our family. County public health has been releasing doses according to priority and, thanks to Rudy’s vulnerability, we made the cut. Some in the field refer to this as the concept of “herd immunity”, so we rounded up all them critters and took ’em down for the shots (moooooo!).
Whatever the reason, most kids are excited to miss a bit of school.
Thumbs up in the waiting room
Getting to play “squeeze the whole family into the exam room” makes for even more fun…
We always like to see Dr. Kirk
But with the wait, the reason behind our visit starts to sink in…
Wait a minute...why are we here?
Livy the Brave said she’d go first…
That lasted!
Max was second…
Toughing it out!
Then is was Wilson’s turn…
Wilson goes to his happy place...check out Mom's discolored hand!
Then Dad shows ’em how it’s done!
That's right...they look up to me.
Trish’s was a little more exciting as her wardrobe choice meant she had to disrobe.
Rudy's Beat 