We continue to take full advantage of our Christmas vacation by engaging in a number of our favorite activities. Rolf and the big boys headed up to Solvang first thing Saturday morning to get a good day of skating in at the skatepark. It still amazes me how the boys can jump back into the bowl and skate as well as they do especially since months can go by between skating treks to Solvang. Thankfully, it was a fun, injury-free trip and a great start to Wilson’s “ultimate-boarder” week as he took off the following day for a snowboard trip with the church youth group and plans to surf on New Year’s day.
Sunday was Livy and Rudy’s turn as they headed off to the lake near our house with a bag of bread to feed the ducks. The last time Rudy ventured out to feed the ducks he wasn’t able to focus on them very well so it was a real treat to see him get so excited this time…a clear sign of growth and progress.
And so the week continues with a couple of visits with good friends, good football to be watched and good play!
Wisely, Rolf turned off Max’s alarm which was set to go off at 6:30am when we went to bed on Christmas Eve and that bought us another hour of sleep Christmas morning. We were awakened by the troops at 7:30am ready to start the day…
The big kids proudly presented their gifts to Rudy first thing…a race car Wilson made in shop class, a teddy bear from Max and a blanket Livy sewed with her Girl Scout sewing skills. I think Rudy was wondering why everyone was home on a weekday and what all the fuss was about but he quickly settled back and watched in amazement at all the excited activity.
Christmas Day 2009 will also be remembered for being the day Rudy had his first shower with Daddy…He is getting much too big for the sponge baths on the kitchen countertop he has been getting and not quite ready for sitting in the bath tub so we thought we’d try something new and he liked it…except when he arched his back and got water all over his face…good thing Daddy has a strong grip…he was a slippery little sucker.
Once we were all cleaned up and dressed, we were off to the Rescue Mission for the Inaugural Santa Barbara Rescue Mission President’s Turkey Bowling Tourney! It was an exciting afternoon of athletic excellence!
Our day ended with us all snuggled in bed at home….once again, so grateful to be home. Rudy ended the day grateful for his new slinky and big red ball:
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!!!!
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.
Our day ended at home with beef stew, Martinellis and a favorite Christmas movie.
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:
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.
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.
Without further ado….
I present to you…
The PuleTide (TM) advent wreath!
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.
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!
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.
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!
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!
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