On The Back Burner…

With Rudy’s Glenn surgery date still unknown, I’ve decided to move forward with plans for the holidays. Expecting that Rudy would have been to UCLA and back by now, we really have lived life this fall from one cardiologist appointment to the next…afraid to plan anything specific. With Thanksgiving and Christmas literally just around the corner…I think it’s time to put the Glenn on the back burner of my mind for now and start making plans for some holiday fun. Unfortunately, we are restricted from traveling to be with our families for Christmas but even planning for a quiet celebration at home involves a mental shift and some preparation. The one benefit of being in the hospital during all the major holidays last year was that I got out of making a big turkey dinner! 🙂 So now I’m looking at the calendar wondering if I can pull off my annual holiday jewelry show in addition to the fun family traditions. It is exciting to anticipate the holidays at home and think that Rudy will get to experience cookie decorating with his siblings, the twinkling lights on a BIG Christmas tree (nothing like the miniature tree he had in his CTICU room last year) and Christmas music playing throughout the house 24/7!!!

Christmas prep started earlier this week at Olivia’s Brownie troop meeting as we started practicing Christmas carols to sing at a local retirement home in a few weeks. Rudy got fussy waiting in his stroller but there wasn’t a good spot for him to stretch out anywhere so I ended up putting him in my guitar case while I led the girls in their singing…He liked the view from the case, I think. He also got to show off his new (and FOURTH official) haircut!!

rudy in case 2 — Hanging out at Girl Scouts...

rudy in case 3 — ...in Mommy's guitar case!

rudy in case 4

Let the Holiday Whirlwind of Fun begin!!!

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!

We know why there wasn’t ever a “Mrs.” Vader

I don’t think we’ve ever gone a full week without posting before. It’s not like there haven’t been milestones and progress to write about. Sleep deprivation would be the culprit. Rudy has had a little battle with a virus. Fortunately, there were no fevers or runny nose–just a lot of junk in his lungs that bring on coughing fits. The medical mystery we’d love some insight into is why the fits always get worse at night. He’s pretty much in the same position on his back or side all of the time, and is able to sleep peacefully for long stretches during the day without coughing or need for any suction. That all changes just about the time we start hitting a good REM cycle. We’ve had our share of nights this week of getting up every 30 minutes to suction him clean. In between, the sleep we do get is kind of like that one would get if you had to share a room with Darth Vader. That little trach makes a distinct array of snorts and wheezes…none of which would be classified as “soothing”.

But no matter how fitful the night was, the morning always brings kicking feet and happy wiggles (Rudy’s way of telling us he’s ready to face the day). So Trish and I take inventory of any new bruises we inflicted on each other by using our elbows to indicate whose turn it is to get up and tend to Rudy, and we stumble on to face the day.

Enough with the stupor. On to the milestones. Rudy celebrated his 13 month birthday on November 1st. He also crossed the 20lb barrier by just a few ounces (time to change the car seat!). Wilson came home with a stellar report card from his first quarter at Junior High. Max and the mightly Chargers finished out their football season with a respectable showing in the playoffs. Trish and I celebrated our 17th anniversary on November 7th. I know many of you are wondering how I could ever surpass the way I spoiled my wife last year, but thanks to our good friends at Tiffany (watch for an upcoming post) I think I did OK.

We’ll be catching you up with some of the more unique happenings our life in the days ahead, but for now we’ll stick to a medical update. We had an appointment with Dr. Harake and the word is…we’re still waiting. We really thought that we’d be coming out of this with a date in hand for our return to UCLA, but that isn’t the case. Treatment of HLHS kids is a series of judgment calls and we’re once again seeing that Rudy has his own unique approach and timeline. Two of the key indicators of when it’s time to do the Glenn are 1) when his 02 sats drop (indicating that he’s outgrowing his shunt) and 2) when his right ventricle looks strained. Rudy’s sats haven’t dropped (in fact they seem to be going up–a hopeful sign of improved lungs) and the ventricle looks fine on the echocardiogram.

Rudy’s uniqueness is evidenced in that the indicators that it’s time for the Glenn usually come at 4 to 6 months of age. There are still a few conversations to be had, but the docs feel it best that the timing of the Glenn be determined by Rudy’s physiology and not according to generalized timelines. Dr. Harake is quick to point out that this is a major operation which shouldn’t be rushed into–especially with a patient with a track record of very challenging recovery from heart operations. On his last cath, the high pressure in the pulmonary artery increased the risk factor. This is something that might change in time, but given that the two key indicators aren’t pushing the need for the Glenn, there’s even more grounds to wait.

There are a lot of areas where we might accept our kids’ uniqueness. Lots of times we actually celebrate it. Admittedly it’s a bit challenging to know how to respond to it in this case because it continues our uncertainty. That part of us that longs to be able to know the future and schedule things craves to have some knowledge about when something so significant is going to take place. It’s not like we want it to happen, but given that it does it’s hard to escape that looming feeling.

As I’ve never heard “convenient” among the descriptions for HLHS, I guess this is just par for the course. We are so grateful for doctors who are deeply committed to Rudy and wrestle over the best course of treatment for him. I’m glad no one is swayed by general timelines. I’m most glad that all of this means more time with Rudy here at home with us. Sometimes it takes a concerted effort to be reminded of this, but that really is the priority.

Happy Halloween 2009

Halloween 003 — Our very own "Bob's Big Boy"

Halloween 008 — He thinks this is very funny!

Halloween 011 — Wilson a.k.a. Keith Moon of The Who, Brandon the caped 7th grader, Max the Fearless Racer and Olivia the Princess Fairy

Halloween 014 — Mom the Spider Queen and Dad as himself, um, a Nerd.

Happy Halloween Everyone!!!

Relishing the difference of this year

Trish just e-mailed these pictures from the La Patera “Hat and Mask” Parade and it brought back memories of all that was going on last year. We weren’t around to see this:

hat and mask parade 004 — Didn't think you could use "cute" and "skeleton" in the same sentence, did you?

Miss Grant did a brilliant job incorporating curriculum in the affair. What’s Halloween without kids dressing up as “The Water Cycle”?

hat and mask parade 003 — Max--because you can't have H20 without an enthusiastic "O"

All observed by one cheerful spectator and another perhaps more ambivalent.

hat and mask parade 006

It seems that part of the preparations for Halloween involves discussion of what one did and wore last year, which makes me quickly aware of contrasts. Last year, we were just coming to grips with the fact that our quick little open heart surgery with the four weeks of recovery was turning into a more indefinite stay. I remember Trish scrambling a bit from a distance to help Oma and Opa get the kids costume stuff together. I remember the drastic shift one felt in leaving the quiet struggle of the ICU and finding oneself in the revelry of Westwood. I remember thinking how this unexpected holiday in the hospital was a planning glitch (instead of the first of several we spent there).

It made me wander back to an old post from last year and filled me with gratitude over the ground we’ve covered. I’ve seen so many more moving examples of parents who summon the toughness I was seeing for the first time when I wrote that. Rest assured, having missed last year, I’ll relish the fun that the simple ritual of dressing up and walking around the neighborhood brings for the kids, but many of our friends around the country whose celebrations will bear unique touches due to unexpected circumstances won’t be far from my heart. I pray that there would be unexpected beauty and encouragement for these special kids and their families. Owen, I’m so glad you should be home in time to trick or treat. Josiah, Moriah, and Stellan–grace and peace (and maybe some contraband candy) to you and your parents. Come home soon!

Multi-tasking Mishap

scorched trach2 — Sanitized to an extreme!

For all you new trach moms out there, I recommend you not multi-task when boiling your child’s trach for the purpose of sanitizing it. 🙂 We change Rudy’s trach and replace it with a fresh, clean one each week. I clean and boil the dirty trach and then once it’s dry, I pack it away for the next trach change. Well, this past weekend I put Rudy’s trach on the stove while I prepared for dinner guests and tended to Rudy’s dirty diaper. Max came in a bit later and said with a turned up nose “What’s that smell?”. Somewhat irritated that Max was turning up his nose at the dinner I was preparing, I quickly responded “that’s mommy’s yummy potatoes, Maaaax!”. Again with the turned up nose he looked at me quizically and walked away when I turned and noticed the smoke coming from the stove top! Yikes!!! No wonder Max had a turned up nose…it smelled awful! Rudy’s trach looked like a over-toasted marshmallow and my pan was ruined… More annoying than losing one of my most-used cooking pans is the fact that I have to track down another Shiley 4.0 Neo trach from our medical supply company (Apria…affectionately known in our household as “crApria”) which will inevitably involve more than one prescription faxed from our doctor’s office and several follow-up calls for which I have very little patience. Oh well, we had fun with our dinner guests nonetheless and my potatoes turned out pretty good too.

We just haven’t had the heart to post at all since Logan’s funeral last week…in part because we’re tired, a little depressed and because the momentum we felt in Rudy’s treatment plan a couple of weeks ago feels like it has stalled a bit. Some days it is really easy to wait for the Glenn especially because we are home and enjoying our fall together under one roof but then other days (like today) the wait is truly nerve-wracking! (sigh)

We were relieved to get a call from the pediatrician’s office yesterday informing us that the H1N1 vaccination was in after a long delay. I was instructed to come in with Rudy right away and to check in without mentioning why we were there. Like everywhere else, our county received a very limited amount of vaccination doses…clearly not enough to go around…so going to get Rudy’s vaccination felt a bit like an undercover covert operation but we are grateful he made the cut. Originally, Rudy’s doctor wanted all of us to get it as an added barrier of protection for Rudy but that isn’t possible at this point and after a call to the bigger kids’ doctor yesterday, it seems they’ve run out of the regular flu shot too so we trust the big kids will be their typical healthy selves this season and stay clear of any major bugs on their own!!

While I had Rudy in the doctor’s office yesterday, I put him on the scale and he weighed in at 19 lbs 8 oz! Rudy has outgrown formula and we started him on Pediasure two weeks ago which is high in calories. The increase in calories seems to be helping him gain weight. It’s still a delicate balance as an increase in volume can be problematic for his heart but because Rudy seems to be tolerating the higher caloric content of Pediasure, we can get him more calories in the same amount of volume. The switch to Pediasure distracted us from making any headway with baby food…Rudy’s pretty uninterested in taking food from a spoon but we’ll start back up with our attempts now that he has transitioned to the yummy, vanilla pediasure shakes. So, we move ever-so-slowly forward (but forward nonetheless) in the world of food and weight gain.

Lastly, Rudy had his annual assessment from Early Start Services this week that is overseeing his developmental progress. Their assessment is broken down into 6 categories: Fine Motor and Perceptual Skills, Cognitive, Language, Social/Emotional, Self-Care/Feeding and Gross Motor. Overall, Rudy is beginning to register in 5 out of the 6 categories at the 6-8 month age level and in 2 of the 6 categories at the 9-11 month age level. As much as we would love to see him sitting on his own and becoming mobile, we are grateful for his progress and know these skills will emerge in time. If they had a category for “smiles”, Rudy’s would register far beyond his years.

Godspeed, Little Man

Logan Balloon

Don’t weep at my grave,

For I am not there,

I’ve a date with a dragonfly

To dance in the air.

I’ll be singing in the sunshine,

Wild and free,

Playing tag with the wind,

While I’m waiting for thee.

I’m a bit short on adjectives to describe the week that’s coming to an end. We said goodbye to Logan yesterday and our hearts are with Brett and Rayme and their family. It was a beautiful day–clear with shining sun; people gathered together in a show of incredible love; images and stories of a wonderful little boy. And it was the most horrible of days.

I marvel at the love Brett and Rayme have for Logan. The courage that they displayed throughout his life was still evident yesterday as they walked resolutely through the ardous steps of laying him to rest and commemorating his life.

So many words one wants to say, but none will bring the comfort one yearns to communicate. So much gratitude for what we have, but such fear at how quickly it might be gone. Who knew beauty and terror could be so closely linked?

I’m better at feeling yesterday than I am writing about it. I suspect these pictures communicate it best.

Holding Our Breath

SM pier 027

We continue to mourn the loss of CTICU friend Logan and anticipate a beautiful celebration of his life this Thursday. Rayme and Brett have shown such courage and vulnerability during this tremendously difficult time. I know they appreciate our ongoing prayers.

It has been hard to know how to celebrate Rudy’s progress this week…we were pleased to find out at Friday’s well-child visit that Rudy finally registers on the growth chart. At 18 lbs 8 oz and 28 inches long he ranks in the 3rd percentile for weight and the 5th percentile for height. Dr. Abbott (pediatrician) is happy with Rudy’s general condition and feels he doesn’t need to see Rudy again for 3 months…unless he gets sick. Rudy is on the priority list for the H1N1 vaccination but the shipment is late in arriving to our Dr’s office so we wait…and are going through gallons of hand sanitizer in the meantime.

I admit that the confidence we’ve felt in Rudy’s progress the past few weeks has been challenged in the wake of Logan’s sudden death. The big exhale I felt after the pulmonologist’s report has shifted to holding my breath again. The Elliott’s loss is a brutal reminder that we can’t protect these little ones from everything…for Logan, a virus turned deadly…as hard as we try to control Rudy’s environment for his protection, ultimately he is in God’s hands…just as he was in the hospital.

I’m not even going to try to figure this one out…just please pray that God will shower Brett, Rayme and their family with comfort and direction as they wade (or maybe it feels more like “drudge”) through their grief. No matter how you slice it, it’s heavy! Thank you dear friends…

I got to hold Logan last year in the CTICU before I got to hold Rudy...

This Is A Tough One…

Just minutes after posting our gallery of goofy portraits earlier today, Rolf and I got the devastating news that Rudy’s CTICU buddy, Logan, passed away suddenly this morning (Wednesday, October 14th). For our longtime Rudy’s Beat readers, you may remember that Logan arrived in the CTICU just a few days after Rudy…flown in from Santa Barbara at 2months of age when his serious heart condition was detected at a routine well-child visit. Because of the SB connection, we bonded with Logan and his parents, Rayme and Brett, quickly. Although Rudy and Logan did not have the same condition, they did have many of the same complications after their surgeries and for awhile it seemed we were walking parallel paths. Logan’s struggle was fierce and intense but he survived and began to show major improvement which encouraged us as we waited for Rudy’s “turning point”. For eight weeks, we shared life and created community with the Elliotts in the CTICU and rejoiced with them when Logan was discharged at the end of November ’08. I watched Rayme make that tough transition to home after a long hospital stay and when our turn finally came to bring Rudy home, Rayme’s texts and blog comments were of great comfort and encouragement because I knew she had just been through it herself. I ran into Brett and Logan at our cardiologist’s office shortly after we brought Rudy home from UCLA in May. He looked so great and strong and happy. Because he was doing so well (as the above picture would suggest), today’s news came completely out of left field. It literally knocked the wind out of me and I immediately began to sob for Rayme and Brett and their families. Please join us in praying for this precious family…for Brett, Rayme and big sisters Kaelee and Emma. No one saw this coming and, as you can imagine, they need our prayers for grace, comfort, strength and faith as they face this tragic loss. The losses along the way have been hard but this one is tough…hitting very close to home for me and Rolf. Please blanket these dear ones in prayer.

Rudy followed Logan in one of their many extubation attempts and Logan was kind enough to pass his "extubation sign" on to Rudy when it was his turn!

Logan and Barbie at the Mattel Christmas Party Dec.08...

1st Studio Portrait!

This week is marked by Rudy’s first trip to the Sears Portrait Studio. Although we have a number of gorgeous pictures of Rudy thanks to Greg Lawler and his artistic eye, we really needed a cheezy portrait studio pic in celebration of his 1st birthday to complete the cheezy portrait studio collection we have in our hallway gallery of all the kids. Rudy was a cooperative model and the photographer and I did all kinds of creative “tricks” to get the desired poses…as always, Rudy put up with Mommy’s shinanagins and this is what resulted…