Rudy’s view of the zoo…

Things are relatively peaceful in these parts so thankfully there’s not much to report. We had a quiet weekend where we stayed close to home, which isn’t so bad when your home is close to the beach and the zoo. The big kids enjoyed Saturday afternoon out in the surf. Since Rudy seemed so excited by the ducks, we thought he’d really enjoy a stop at the zoo on Sunday. Turns out he wasn’t all that excited. Then we realized that, regardless of what species might have been before us, this was pretty much the view from his stroller:

Christmas cheer at the hospital

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:

UCLA 003 — 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!

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.

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.

Christmas Week is Here!

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!

puletide greetings — 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 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.”

Two of Rudy’s Unsung Heros

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.

MikeChampion and Rudy — 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 and Rudy — Janelle presents Rudy with the hard-to-find $4 plastic gizmo

Minor Medical Mistakes

Several folks have observed how we seem to have gotten taking care of Rudy “down”. That’s comforting as, seven months ago, all of the details of giving meds, suctioning, feeding and caring for him seemed very intimidating. But now, it’s all rather routine. Perhaps I was feeling a bit too good about my competencies over the weekend when I did the full bath and trach-change routine on Saturday to give Trish a morning off. Yep, I can do this all by myself without much consternation.

Last night I continued to feel pretty good about myself and, as Trish was dozing on the couch, I decided I would take care of getting Rudy ready for bed without disturbing her. Upon changing his diaper, my expertise as a Jr. Doctor led me to conclude that some prune juice might be in order. Since he was asleep, I figured it would be best to give it in a 30ml syringe through the g-tube. As I was getting that ready, I decided to mix in his Singulair (in granular form) as we missed that earlier in the day.

Since it was after 11pm, I made a judgement call to do this quick and easy and tossed the powder into the syringe and then poured in the prune juice. I thought I’d be all clever and not dirty a bowl by mixing it right in the syringe. As it turns out, Singular granules have qualities similar to concrete and I ended up with a major plug in the tube I had hooked up to the syringe. I shook things up as best I could and decided just to hook it up to Rudy and see if I could just push it on in there.

I suspect hindsight would reveal that many a household accident has been preceded by the words “Let’s see…maybe I just need to push a bit harder…” Bed was calling out to me and I increased the pressure on the syringe’s plunger while nothing seemed to happen. So I pushed harder…until the side port of the tube popped open and a geyser of prune juice erupted ALL OVER Rudy’s clean pajamas, the bed and the wall about 6 ft away (think Diet Coke and Menthos).

There’s nothing like an hour of midnight cleaning to return one to humility. Thankfully, Rudy slept soundly through the whole episode of getting cleaned up and into fresh pajamas. I instantly applied the learning from this one tragedy to avoid a second as I attempted to load the bedspread into the washer. It dawned on me that I had to push pretty hard to get the whole thing in there and then had to push hard once again to get the door to shut completely. At that point it was a wise marital move to at least rouse Trish enough to inquire as to whether there was anything problematic in the course of action. Plan aborted and crisis averted. Thanks to the realization that I work in a place where there’s an industrial laundry, everything will be back in order this evening.

Here’s to the valuable knowledge we acquire by making mistakes. Today’s another day and Rudy’s thriving despite our bumbling.

Cabin fever on a rainy weekend

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!

An internet sighting of a Rudy fan

Rudy’s fans are everywhere. You never know where they are going to pop up. A friend of ours (hi, Rebecca) noticed a familiar bracelet appear in a video she was watching on the Antioch University website. Check it out…and while you’re at it you might just find out something about the BA programs at Antioch University. Way to represent, Dick! Rudy thanks you!

Click here for the Antioch website and then click on “Tell Me More About the BA Program”. Or, you can go straight here to see it on Vimeo.

Remember, you too can be a star on Rudy’s Beat. Wear your Rudy bracelet proudly!

Herd Immunity

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.

Getting to play “squeeze the whole family into the exam room” makes for even more fun…

flu shots 002 — We always like to see Dr. Kirk

But with the wait, the reason behind our visit starts to sink in…

wait a minute — Wait a minute...why are we here?

Livy the Brave said she’d go first…

Max was second…

Then is was Wilson’s turn…

wil shot — Wilson goes to his happy place...check out Mom's discolored hand!

Then Dad shows ’em how it’s done!

rolf shot — That's right...they look up to me.

Trish’s was a little more exciting as her wardrobe choice meant she had to disrobe.

An end to the trauma brought cathartic release…

Rudy sat back smugly and took it all in…

flu shots 003 — "For once this dr. visit isn't for me!"

Holiday shouts to Johnny, please!

Several readers have commented about how Rudy’s Beat has made them aware of the HLHS community and has led them to follow and pray for other families who are waging their own battles. As we’ve felt the isolation that’s a part of such a struggle, we draw comfort by being connected to others at various stages in the journey. Knowing what others are going through can be encouraging, helpful and, yes, at times heartbreaking–but it’s much better than going through this alone.

A few months ago I re-connected with Kathy, a high school acquaintance in NJ 20+ years ago, as her teenage son is a seasoned HLHS warrior. She just forwarded the following and I thought some of you might want to be involved.

Kathy writes:

The son of a friend of mine is losing his battle with Congenital Heart Defects. He is 19 and has HLHS just like Garrett. He is trying to hold on through the holidays, but his lungs have irreversible damage and it is straining his heart. His mother has put out a request to give Johnny a “shout out.”

MaryAnn has blazed this trail ahead of us and has always been a tremendous source of strength and advice for me as we have gone through our challenges with Garrett. She has had her hands full with Johnny’s health concerns for a long time but whenever I was having a challenging moment she has ALWAYS taken the time to write me a note acknowledging in her humorous way that, yes, the whole situation sucks but that I am a great mom doing the best I can in a very difficult situation. It means a lot.

Here is the email she sent out. Please take a moment to read this note and see if it is something you would like to do. Also, please feel free to repost this note to anyone you think might be able to.

———————————–from MaryAnn —————————-

So we were basking up here on the sunny shores of Lake Erie (in our down-filled parkas)and realized it was time to send the hard message to our family and friends.

Johnny’s gotten excellent medical care in the year we’ve been in Ohio, but the condition of his damaged lungs is something that couldn’t be reversed. Now he is in end-stage pulmonary failure, and the strain on his heart is showing.

However, as is his custom, he continues to defy logic. He survived a bout of flu last week, which prompted a discussion with his nurses and hospice people. We think Johnny is holding on for as much of the holidays as he can, so we’re shifting to an accelerated Christmas plan here.

If you’d like to be part of our shout-out to Johnny, here’s the thing:

I’ve set up an e-mail address for Johnny — johnny.aquilino@yahoo.com — and am asking everyone and anyone to send him holiday greetings by e-mail.

What I’d really love is for everyone to make a hand-lettered sign with a message on it for Johnny, then get a photo of themselves holding the sign and e-mail it to him. I’ll print them out and hang them all in his room — and I’d love to cover the walls, if you catch my meaning.

Anyhow, I’ll keep you posted

Love

MaryAnn

Another reason to love Dan Levi

I failed at masking my disbelief when, at our last appointment, Dr. Harake reported that Dr. Dan was coming to Santa Barbara to run in a road race. Don’t get me wrong–he’s a gifted and personable cardiologist who invents cutting edge gadgets to help little kids in the fight–but the memory of watching him chomp on a bag of Doritos during 9am rounds didn’t exactly convey the image of “runner”.

As I suspected that Dr. Harake would not be able to resist passing on my initial shock, I was given pause when I received an e-mail from Dan late in the weekend. Instead of taking umbrage, his devotion to Rudy was very evident.

Rolf

Thanks to you and Rudy, I had a dominant effort in the clydesdale (>200 lbs) division of the SB Half Marathon. I finished in under 1:56 min with a staggering 8:50 min/mi pace. Bilal told me that you were “surprised” to hear that I would attempt such a thing so I decided immediately to dedicate my race effort to Rudy. When I almost suffered a myocardial infarction at mile 9 of 13, I just started saying to myself “Rudy never quits and Dr Dan never quits” – this made the last 4 miles possible!! Tell Rudy Thanks! I will send him my medal!!

Dr Dan

P.S. see number 583 and please note that there were 1705 runners thus I was not last! Also note efforts by Jenn Levi (244 overall) and Noel Reemtsen (much faster than me-#263)

Once again, I am moved by the individuals we’ve met on this journey and grateful for them. Good show, Dr. Dan, and thanks for being one of Rudy’s heros!