Spring Has Sprung and We’re Hittin’ The Road!

The unusually wet and cooler weather we’ve had this winter broke and we’re enjoying spring in full force around here. Olivia snapped these pretty pics on a walk to see the ducks this weekend…

Life has picked up in full force as well with a bunch of school events and evening commitments…it’s good to be busy and in the midst of it all, Rudy just goes with the flow. Rudy had his monthly cardiology appointment a week ago Friday with Dr. Harake and things remain the same. Many have inquired whether or not Rudy’s new pulmonary hypertension drugs are making a difference and that’s just not something we’ll be able to detect in his routine echocardiograms. Dr. Harake confirmed that we’ll have to schedule another heart cath at some point before we can proceed. And so, we all wait as expected…but in the meantime, Rudy is not far from everyone’s mind down at UCLA as Dr. Harake told me that when he’s introduced to someone new in the ICU now, he’s introduced as “Rudy’s Doctor”! How cute is that!!!

We are grateful for this time, though, and see it as our window of opportunity to take the family back to Kansas over spring break to see my family. This has been my heart’s desire ever since Rudy was born and my Dad was diagnosed with brain cancer. The plan was to go after Rudy recovered from the Glenn but with it being pushed back as far as it has, even Rudy’s doctors feel like now is the time. They have given us the greenlight to go as long as we don’t fly so we’re renting a RV and plan to hit the road next week for what will, no doubt, prove to be a memorable family adventure! I’m both nervous and excited and consider it a real gift to be making this family trip WITH Rudy! Stay tuned….

As I was busy organizing Rudy’s medical supplies for the trip, the big kids asked if they could borrow Rudy’s wagon to which I said “yes” assuming they were going to use it to give each other a ride or collect treasures of some kind…it wasn’t until “after the fact” that Rolf and I found out about the natural progression of BMX stunt tricks happening in our cul-de-sac…I suppose I should pay more attention should the children ask to borrow both the wagon AND Rudy next time!

Shortly after the filming of this video, Olivia made another donation to “Locks of Love”…a cool, summer look to coincide with the warmer temps:

Another indication that time is marching on…summer will be here before we know it!

Speaking of time marching on, our soon-to-be 13 year old is becoming a young man…Wilson participated in a 30 hour fast with his church youth group this weekend to bring awareness to hunger and poverty in the world today. During the “30 Hour Famine”, the kids walked through the neighborhood collecting canned goods for local families in need, built a food pantry in our church library, served dinner to the homeless at the Rescue Mission and slept outside in cardboard boxes. I kind of braced myself for him to come home tired and grumpy after the challenge of the famine but instead he came home clearly moved by the experience, energized and upbeat. At one point, the group watched a video about kids in need in Africa and Wilson said he couldn’t help but think about Rudy and how he probably wouldn’t have survived if he had been born in a place like he saw in the video. So true…how truly blessed we are and how very much we have to share! A powerful lesson for Wilson this weekend that I pray helps shape in him a lifetime of giving!

Rudy bust1 — Road trip? What's a road trip?

Okay, I’m off to do a little packing…

Happy Birthday Maxo!

Max turns eleven years old tonight and we’ve had fun celebrating him in a variety of ways…cupcakes with his classmates and dinner at Chili’s with the family yesterday and a special Subway sandwich delivery at school today! Max’s big birthday wish is a family day trip to Knott’s Berry Farm which we plan to take next month…something fun to look forward to…:-)

Two of the things we love most about Max is his ability to create fun and embrace his passions in life…qualities that are often displayed in our cul-de-sac:

(last weekend’s impromtu BMX stunt run)

I’m so glad Rudy has Max in his life…to show him how to live it to the fullest! Happy Birthday Maxo!!

march 1-9 001 — Oops! A little too close even for Max's comfort level...

17 Months!

My computer has been acting up the past couple of days and I wasn’t able to commemorate Rudy’s 17-month bday so here’s a quick, belated post! Rudy got a special treat on Monday with a visit from Earl the blogging monkey. Earl belongs to a friend from church and is a fellow wordpress blogger…he came and brought some love and smiles to Rudy and helped us celebrate 17 months!!! Well done Rudy!!! You’re doing great….

Rudy and Earl3 — Earl was very curious about all of Rudy's equipment...

Rudy and Earl4 — Rudy's paci-monkey was a big hit!

Rudy and Earl2 — March 1, 2010 - 17 months old

As of yesterday, Rudy is on his 2 new pulmonary hypertension drugs…Tracleer and Viagra. The Tracleer comes with ALOT of paperwork and instructions for monthly blood tests to keep tabs on his liver function as well as monthly consults with the specialty pharmacist…all very much routine but a little intimidating. The Viagra (Revatio) is dispensed every 8 hours so we’re back to a staggered med schedule which discourages me for some reason this morning. I’m sure it will all become second nature like everything else in Rudy’s care but today it’s new and different and I don’t have the energy for “new and different”…I just pray the meds work without any adverse side effects and help Rudy in his slow journey from point B to point C. It’s funny how there are days when nothing is particularly “wrong” but still it takes all you can muster to remember “right foot, left foot, right foot, left foot”…crazy stuff! Okay, I’m off to officially update our med schedule!

Happy Valentine’s Day 2010

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!!

“PULMONARY HYPERTENSION”

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!

Now What?

Boy, I sure wish I knew the answer to that question. Although there weren’t any major surprises in the results of Rudy’s heart cath on Thursday, I have to say the disappointment over his lungs is weighing heavy on me. I guess I expected his lungs to show significant improvement because he is so much bigger, stronger and looks so much healthier than ever before. To hear Dr. Dan say “he’s not a strong candidate for the Glenn at this point” took me by surprise and left my stomach in knots. Deeply disappointed yes, but at the same time, I don’t want the disappointment to overshadow the encouraging report on his heart. God has allowed Rudy to thrive with a shunt he was expected to outgrow months ago! One of many miracles along the way that is getting us from point A to point B. And so we wait with our weight of mixed emotions and re-align our hearts and minds to living in limbo a little longer (the alliteration there is kind of fun to say 5 times real fast). We haven’t heard word yet from the pulmonologist whose consult will hopefully help direct the cardiac team in their decision-making process but Rudy does see Dr. Harake (SB cardiologist) tomorrow morning so we hope, hope, hope he has some news for us.

To add to the list of reasons to worry, both boys had issues surface this week that were out of character for them and it’s hard to know whether it’s just normal pre-teen boy stuff or stress-related behavior. I feel like Steve Martin in the movie “Parenthood”. Have you seen that movie? I remember thinking it was funny when I first saw it in college but now I watch it and just howl with laughter as I can TOTALLY relate to it’s portrayal of parenthood. Anyway, there’s this one scene when Steve Martin is distressed over his young son’s issues with anxiety and is fearful that how he responds in that moment will mean the difference between his son becoming a well-adjusted, valedictorian college graduate OR the kid who locks himself in the clock tower on campus in a shooting rampage! That’s how I’m feeling this week…like I could “blow it” on so many levels…well, not “could blow it”, “HAVE blown it” in the way I’m handling life and my kids in this big bubble of disappointment and fear. Today I wrestle with the question “how do you help your kids navigate a journey like this in a healthy, hopeful way when you are having a week when you can’t seem to do that for yourself?”.

I’ve been so consumed by how I’M feeling that I totally forgot to commemorate Rudy turning 16 months old on Monday!!! SIXTEEN months…that means we’ve had Rudy home for over 9 months! With all the joys, heaviness, victories and stomach knots…it continues to be remarkable!!!!

He’s In

After all the consent forms and information gathering, Rudy was prepped and taken to the cath lab a little before 8am. Rolf was able to accompany Rudy into the lab as long as he dressed appropriately…good look for him:

rudys cath - Rolf — Lucky Rolf...they're letting him keep the suit!

So, he’s safely in and sedated and we should hear something in a couple of hours…

Settling Stomachs

Okay, so I’m probably sharing too much information about what’s going on in our household but be thankful it’s not as detailed of an account as what Max and Livy were discussing this morning as they compared vomit stories with one another. Ha Ha As it turned out, Rolf stayed out in the living room all night keeping an ear on the sickos…everyone’s tummies finally settled down about 2am. I stayed in our room with Rudy and so far he’s doing fine. Unrelated to the events of last night, Rudy had an early morning doctor appointment with a local ENT (Ears, Nose and Throat Doc) so I got him up, ready, out the door and back again before 9am. First thing this morning, Olivia was pretty weepy and cried as she said, “the worst part of throwing up is that I can’t be close to Rudy” (sweet girl) but by the time I returned home, she and Max looked chipper and were soon eating saltines. ‘Praying for a day of rest for the kiddos and a productive one for me as I finish up a few details before tomorrow.

Although sympathetic to his siblings, Wilson kept his distance and occupied himself with a good book…

Wilson mask — We're all becoming a little phobic...

002 — Rudy, however, doesn't seem too concerned.

Help!

Oh my, it seems we’re getting hit hard….Maxi has been getting sick every 20 minutes since 2:30pm this afternoon (it’s now 8:30pm Tuesday night). Now Olivia has joined the chorus – both are banished to their rooms and I’m nervously covering everything in Lysol spray. Wilson has resorted to wearing a mouth and nose mask with medical gloves and I’ll be sequestering Rudy back in our room for the night…Rolf has the first vomit watch! Ugh, THIS of all weeks!!! It’s discouraging but I’m hoping that because it came on so hard and fast, it will run its course just as quick and NOT SPREAD any further. Please pray…between the sick-watch and Rudy’s suction needs, it’s going to be a long night. Thank you!!!

Packing The Overnight Bag

I pulled my overnight bag out of the garage to pack for this week’s trip to UCLA and I had to laugh because it was still packed from Rudy’s last heart cath back in June! I guess I was a little distracted when we got Rudy home and the scary thing is I didn’t miss any of the items that were packed away for half a year! Silver lining? – one less item on my “to do” list this week (pack overnight bag…done).

My heart has been both anxious and excited to move forward as I’ve anticipated Thursday’s cath but, I admit, today’s news of Josiah’s passing has taken the wind out of my sails and I wish we could just scoop Rudy and the big kids up and hide somewhere far, far away. That, however, is not an option. We can’t go back, we can’t detour around it…we have to walk forward into (what feels like) the eye of the storm and pray. And so, we ask all you prayer warriors to, once again, deploy on Rudy’s behalf and blanket him with prayers for wisdom among those planning his treatment, continued healing of his lungs, a successful heart cath procedure, an encouraging post-cath report and, most importantly right now, good health. If Rudy catches a bug, the cath will have to be rescheduled and poor Maxi came home early today because he vomited at school. At first we thought it might just be because he had a vigorous workout in PE after lunch but he has continued to empty his stomach – five times since getting him home – and, understandably, he’s fading fast. I’m praying his body clears everything out soon and he is then able to sleep it off. Please pray Max recovers quickly and Rudy is protected from any virus or infection lurking around.

Rolf and I will take Rudy down to L.A. early Thursday morning and Rudy’s cath will, most likely, start in the early afternoon. For those of you who are freed up to check the blog on Thursday, we’ll post updates throughout the day. We hope to come home on Friday with a date on the calendar for the Glenn! Bless you, friends, and thank you!