It’s certainly hard to top last year’s Valentine greetings but we’re going to try with our version of “Lean On Me”. Given all the “leaning” we’ve been doing the past 18 months, we’re eager to return the favor…”so just call on us, brother (and sister) when you need a friend. We all need somebody to lean on. 🙂
Happy Valentine’s Day!!
P.S. A BIG thank you to everyone who ordered a “Rudy’s Heart” pendant! Together we raised an initial gift of over $500.00 for Camp del Corazon! Whoo-Hoo!!
Dr. Harake handed us a prescription at our appointment last Friday for two new meds and wrote on the bottom of it in big, block letters “PULMONARY HYPERTENSION!”. Never before has he written SO CLEARLY the diagnosis for which a drug is being prescribed but apparently this time there is need for clarification as one of Rudy’s new meds is Viagra. Yep, you heard me right and many of you heart moms out there can relate to the awkward interaction one can have with the pharmacist when trying to fill an order of Viagra for a baby. Here’s a little trivia for you…the drug was originally developed for it’s vessel dialating function and when some lucky guinea pig discovered it’s positive side effect, it quickly began being marketed for, well, you know…. Poor Viagra is a bit type-cast because it actually serves a very important medical purpose in many heart and lung patients. So, it’s off to the pharmacy we go with two new meds on our list bringing our grand total back up to 13 daily meds. Bummer! I guess Rudy’s list of meds will always be somewhat fluid but adding meds always feels a bit like taking steps backward instead of forward.
After talking with Dr. Harake (SB) at our appointment and then with Dr. Dan (UCLA) over the weekend, the plan for now is to wait a couple of months for these new meds to address some blood flow resistance issues in the lungs. The high pulmonary resistance makes the Glenn a very risky operation for Rudy as not enough blood would make it through his lungs to sustain him. This is actually a seperate issue from Rudy’s low oxygenation (which is due to damage or disease the lungs are trying to recover from); but the physiology of it all would suggest that if the blood flow is allowed to freely flow then the oxygen sats could be influenced. I don’t quite understand it all yet but the main point is we are going to wait…and the fact that we can wait is a blessing we don’t want to overlook. The timing of the Glenn in HLHS patients is often determined by heart failure and doctors are forced to do the surgery despite any critical concerns about the lungs. As most Glenns typically happen around 4 to 6 months, we are amazed that Rudy’s trusty single ventricle keeps beating without any signs of failure even after 16 months. Since we’ve been going month-to-month since June, even knowing we have a 2 month timeline is more definition than we’ve ever been given so we’ll work with it.
Speaking of working, Rudy continues to try hard in his therapy sessions and we’re working with objects that are a bit heavier to increase his strength. Wooden spoons are the “barbell” of choice these days:
Thank you for standing alongside us in this and for standing by as we wait this thing out…we will most certainly keep you posted!
Max was well supported by Wilson, Olivia and Rudy and his teacher, Miss Grant, who was kind enough to come as well. It was a special opportunity and Rudy enjoyed being a part of it all…
And so, we mark our journey with Rudy with yet another memorable holiday. ‘Just 10 more days until the heart cath…anxious and excited…and, as always, very grateful.
The start of the new year has certainly directed Rolf’s and my thoughts to Rudy’s upcoming surgery but, apparently, it’s weighing on the kids’ minds too as Max and Olivia composed their own version of the following Christmas classic over the weekend…
“The Twelve Days In The Hospital”
On the twelve day in the hospital the doctors gave to me…
12 naps a day
11 x-rays of me
10 doctors operating
9 nurses dancing
8 hospital gowns
7 hopes for the future (how profound and absolutely sweet it this one!)
6 bottles of milk
FIVE STITCHES IN THE STOMACH
4 stuffed animals
3 pacifiers
2 dirty diapers
and an open heart surgery!
As scheduled, Rudy’s dance card has been full this week with visits -so far- to Dr. Harake (SB Cardiologist) and Dr. Pornchai T. (UCLA Pulmonologist). Both appointments went pretty well…no changes on the heart front and we have the heart cath scheduled for Thursday January 28th. Rudy is second on the schedule that day so ours will, most likely, be an overnight stay like last time. There is also the remote possibility that they will go ahead and admit Rudy into the hospital for the Glenn surgery at that time depending on what they find during the cath so we’ll plan accordingly. Either way we hope to have a plan for the Glenn as a result of this heart cath.
Rudy and I had a nice drive down the coast to L.A. on Tuesday. Dr. Pornchai did another thorough examination of Rudy and was a bit concerned this time with the way he was breathing. His breathing was a bit labored but he was also a little worked up after the long car ride, a late feed, being examined (normal baby stuff). I didn’t notice much difference from the way he normally is which then left me feeling like maybe I’m not reading Rudy right…what am I missing?…should I be concerned?…etc, etc. I’m tellin’ you, the mind games you start playing with the smallest of triggers can drive you crazy. Dr. Pornchai added a nebulizer med to Rudy’s regimin so we’ll start that, keep an eye on him and trust that we’ll know when something is wrong…ugh!
Of course, we had to pop up to the CTICU quickly while we were in the neighborhood to say “hi” to our staff friends and the sweetest part of my day was running into Dr. Andy M. who we haven’t seen since we left the hospital back in May. As one of the attendings in the PICU/CTICU, Dr. (Papa) Andy oversaw Rudy’s care on numerous occasions and he was so pleased to see how Rudy has grown. In his sweet, quiet way he just starred at Rudy and marveled so sincerely at how beautiful he is. Ahhhh, music to a mother’s ears. It is always so reassuring to check in with the folks on 5 east as they know so intimately how far Rudy has come. As the atmosphere in the unit on Tuesday was, once again, serious and intense, I hope our quick visits are mutually encouraging!
Did I mention Rudy and I had a nice drive down the coast? We are definitely blessed with a pretty commute down to L.A….especially in the winter time. I LOVE Santa Barbara in the winter… the sky is so clear and blue, the air is fresh and you can actually see the channel islands! Rolf captured these pics of Wilson on Sunday…a calm Pacific Ocean-
Water calm enough for Rudy!!!…I look forward to the day when Rudy can join them on one of their kayak excursions!
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.
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…
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!
…the Christmas season is upon us!
The outdoor lights are hung…
A little shopping has been done…
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
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…
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
“Just hear those sleigh bells ring-a-ling….”
Rudy's Beat 