A big thanks to everyone for all the birthday greetings and well-wishes. My birthday officially marks the start of the Geyling “birthday season” as mine is in February, Max’s is in March, Wilson’s is in April and Rolf’s is in May! Poor Livy was all by herself in September until Rudy came along and added October to the line-up! Ha Ha At least we have alot of upcoming activity to fill our time as we wait for news of Rudy’s surgery. Unfortunately, Rudy has yet to start the two new meds prescribed THREE WEEKS ago due to a few challenges in obtaining the proper authorizations, etc, etc, etc…We see Dr. Harake again on Friday so surely we’ll get it all squared away by then.
In the meantime, we thought you’d enjoy seeing some of our recent miscellaneous fun…
(The following “cool pics” are courtesy of Greg Lawler!)
(As a fully trained Girl Scout Leader, I must add a disclaimer that the following recorded activity is not sanctioned by Girl Scouts of America OR
Brownie Troop #50649 due to the risk factor involved. This is what happens when DADS, after watching too much Olympic snow cross, chaparone. It was, however, the favorite part of the trip for our little dare devils and in their words “AWESOME”.)
Wilson was the substitute drummer at church this weekend! I sent Max up front to catch a little footage of Wilson’s debut…the video is a little bouncy because Max got into the moment and started dancing as he filmed! 🙂 Oh well…it’s fun nonetheless!
We were told not to make a big deal of things today, but sometimes you have to bend the rules just a little bit. We thought about bursting forth in a festive chorus, but realized that Rudy couldn’t sing along. Instead, we mustered the creativity and precision to come up with this display. OK, so we had to wake Rudy up from a nap and the camera work leaves a bit to be desired, but if you set that aside it begins to evoke the pagentry of the opening ceremony in Beijing. Maybe just a little.
The journey of having an ill child is one of discovery. It starts with suddenly being made aware of a condition (like HLHS) you never even knew existed and from there the new discoveries just keep coming–complications, medications, surgical procedures, medical specialities and hospital survival secrets. Unfortunately, one also discovers such levels of soul-sucking beauracracy that bring forth speculation of whether Dante miscounted. We try not to dwell on the more frustrating dealings of managed care, medical billing and insurance approvals but dealing with these details does take up significant amounts of weekly time and energy. Bottom line, we are so grateful that we’re well provided for–we don’t have to stress about having coverage, even if getting all the parts lined up is a continual chore.
So, as this week had the usual share of goose-chases and phone trees, I thought I’d focus on the positive and give credit where it’s due. I recently had the joy of dealing with an effective, efficient and very compassionate beauracracy. None other than the California Department of Motor Vehicles. After months of taking Rudy out in public with his stroller, tanks and gear it suddenly dawned on us that the powers that be might have had us in mind when they created all of those disabled parking spots we were always walking past.
It wasn’t that hard to download the forms and get them signed by our doctor, but my actions conveyed little faith on that Friday morning when I headed off to see what gives. I had a book, the newspaper and even stopped for a large coffee to get me through the inevitable wait.
It took less than four minutes.
The friendly reception lady looked the form over, punched a couple keys on her computer, opened her drawer, handed me the golden (OK, blue) ticket and told me the renewal would arrive in my mailbox in May 2011. It was hard to conceal my shock (not to mention my reading material) and I uttered amazement of how quick and easy this all was. She said, “What do you think this is, crApria?”…No she didn’t say that, but did suggest that I should enjoy my coffee and newspaper in nicer environs than the Goleta DMV.
It was easy. Easy is good. The DMV was easy, therefore the DMV is good. I love the DMV. Now we only need to remember to use our handy placard. On more than a few occasions we’ve driven circles around parking lots like all the little people do before we remember that Rudy gets the VIP treatment!
Greg Lawler was an award winner in Specialty Color Services’ Annual Photo Contest. Greg is a good friend, generous soul and talented photographer. I’m not saying he doesn’t have a lovely wife and very cute kids, but pictures he takes of them don’t seem to win any awards. It takes subjects like this to make that happen.
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. 🙂
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!
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!!!!