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!

Embrace the blessings when they come!

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.

Congratulations, Greg…and YOU’RE WELCOME!!  🙂

Hi Rudy Fans!  First of all, sorry for the silence.  I was writing posts yesterday from my iPhone and between my own incompetencies and wireless dead spots all over the second floor (due to all the radiology equip), I thought a quick update about us leaving the hospital posted.  Now I know what the “what’s going on?” e-mails and texts were about.

First a more detailed recap:  Our day started early with us pulling out of SB at 4:20am.  The upside of leaving that early is no traffic and, even with a stop for gas, we got to UCLA by six to go through check in and prep.  Before too long, we were rolling to the Cath Lab at 7:30.  As has already been documented, I got to be the one parent to go in until Rudy was under.  The second floor always makes such an impression on me–they mean business there–big hallways, everyone gowned, big pieces of equipment standing at the ready and crews of attendants purposefully moving patient gurneys with quiet focus.  You stay with your escort because every corner looks the same and the signs tend to be jargon and technical abbreviations.  If you don’t know where you’re going, you’ll quickly be identified as someone who shouldn’t be there.

Even though Rudy is twice the size now, he still looked tiny when he was placed on the end of the 12ft table in the Cath Lab.  He fussed a bit and for some reason, wasn’t able to draw comfort from Daddy in his bunny suit.  Before too long, the Anesthesiologist came in and gave the resident the OK to start the gas and after just a few breaths Rudy was in a happy place.  So small and peaceful one could easily overlook him in the middle of all the screens and huge machines that make up the Cath Lab.

Trish and I were glad to discover that one can now check out a pager from the surgery waiting room so you don’t have to sit there and bite your nails with a roomful of uncomfortable people.  We headed to get some breakfast and soon found ourselves in a mini-reunion in the dining room as doctor and nurse friends came by to visit for the next three hours.  Some just happened to be walking through; others had seen us on the schedule and figured they’d know where to find us.  Thanks, friends–sitting there catching up with so many dear people was a far cry from those first waits where we sat in anonymous angst as the clock ticked on.  Even though it’s an unwanted journey, we can’t help but wonder how robbed we would be had we not met the precious people that came with it.

Good company made the time go quickly and at 11:30 Dr. Harake came to get us so we could sit down with him, Dr. Dan and Dr. Brian to go over what they found on the cath.  The good news is that the heart looks very good.  It is pumping well; there is no leakage or reguritation in the valve, all the pressures they rattled off in all the different places are where they need to be; the Sano shunt Dr. Brian put in is only narrowed slightly on one end, but still quite clear; the pressure in the pulmonary veins is where they like to see it.  Perhaps the only negative cardiac issue is that the heart is enlarged, but that’s not surprising as it’s working hard.  The team did not see any need for interventions (coils, stents, etc) of any kind.

The main area of concern continues to be Rudy’s lungs–which has significant relevance to the Glenn recovery.  In healthly lungs, blood is 99-100% oxygenated as it emerges from them and Rudy is 87% on his left lung (perhaps acceptable) and 74% on his right lung (far below optimal).  There are perhaps three causes for the chronic lung disease Rudy is struggling with:  1)  the extended time he spent on the vent; 2) the struggles he had with chylothorax and the measures the team had to take to stop it; and 3) perhaps some initial deficiencies he was born with.  At the cath back in June, the right lung saturation was about 72%, so there hasn’t been much improvement (though Dan points out that this is better than it declining further).

The team would obviously prefer to do the Glenn with the lungs in optimal shape but there is no clarity on how long this will take and if it’s even possible.  The risk of waiting is that Rudy’s heart function will fail at some point and he’s already far past the typical window for this.  So, the plan is to consult with the pulmonologist to see if there is any reason to believe that Rudy’s lungs can see substantial improvement over the next six months.  If that’s the case, then it may be worth the risks that come with waiting.  If there’s no clear assurance things will get better in that time frame, then we’ll likely schedule the Glenn in the next 30 days and move forward.

There were two specific things we had been praying would come from the cath:  1) Evidence that Rudy’s lungs were healthy and 2) a definitive date scheduled for the Glenn.  We’re glad for the positive reports that came regarding Rudy’s heart, but it’s been a bit of a struggle to come up empty on the two items we were hoping for.  We didn’t have much time to think about it yesterday as we met up with Rudy in recovery and sat with him for 4 hours until he was cleared to go.  Between the scheduling issue that bumped us to first case and the fact that Rudy didn’t require any interventions, they would only keep us overnight if Rudy was having problems coming out from under anesthesia, but he was awake before they wheeled him out of the cath lab.  He dozed off a bit here and there, but was otherwise happily calm.

Based on our past history, I think we’ll have a hard time packing for a simple hospital overnight ever again.  We proved we can re-assemble the mobile command center that carried us through seven months in short order, however, the only problem was that we hadn’t packed anything for Rudy (like his food and medicine), so that’s why we’re grateful to have friends in the right places–angels in the CTICU (Thanks, Jennifer!) got us squared away with provisions for the drive home.  We hung around LA for awhile and had dinner with friends, both to wait out traffic but also to stay a bit close by the hospital (just in case) before we made our way back to SB later in the evening.

After the long day yesterday, we’ve taken it easy today.  The big kids went off to school so Trish, Rudy and I layed low, only venturing out for a quick picnic down by the beach.  Rudy slept a bit more than usual and concerned us awhile when he looked blue and his sats were in the 50s.  We entertained calling down to UCLA until we discovered that his O2 hose was disconnected from the concentrator.  Duh!  Rudy has proven he can overcome incredible obstacles, but can he survive us?

I’ll try to put words to how we’re feeling as we’ve talked and tried to process yesterday’s results.  I’d have to say we’re feeling EVERYTHING.  That’s the best way I can put it.  Disappointed because we didn’t get the answers we were hoping for.  Weary because we’re still resigned to living life with an uncertainty that doesn’t allow us to plan more than a few weeks at a time.  Crazy in love with this little boy who weathers all of this with such serenity.  Sad that he has to weather it at all.  Awed by courageous people and an incredible facility that focuses so much expertise on us.  Grateful that the first step of the repair done on his tiny heart not only lasted longer than anyone could conceive, but through more complications than most would imagine.  Impressed with older siblings who love Rudy and are shouldering what all this asks of them so well.  Regretting that this is turning into such a big part of the story of their childhoods.  Confounded by the irony that Rudy has a major heart defect but that’s turning out not to be the most difficult thing for him to overcome.  Grateful for friends and family that pray for us and don’t leave us to walk this alone.  All at the same time.  We’re feeling EVERYTHING.

Surprises are part of this journey so this chapter started with getting final confirmation at 10:30pm last night from the hospital that we were slotted for the cath lab at 7:30 am (not 11 as we were told a few weeks ago). So, we were up and rolling out of SB just after 4am and got to UCLA for check in at 6am. Rudy slept the whole way and thusfar is enjoying the novelty of the adventure.

More as things develop.

Need a pick me up?  I think I’ve got just the thing…

Feel better?  I thought so.

Thanks to Dr. Ryan, a man of many talents!

Things are relatively peaceful in these parts so thankfully there’s not much to report.  We had a quiet weekend where we stayed close to home, which isn’t so bad when your home is close to the beach and the zoo.  The big kids enjoyed Saturday afternoon out in the surf.  Since Rudy seemed so excited by the ducks, we thought he’d really enjoy a stop at the zoo on Sunday.  Turns out he wasn’t all that excited.  Then we realized that, regardless of what species might have been before us, this was pretty much the view from his stroller:

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.

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.