Our family had two eventful weekends in one.  First, Trish and Olivia got to go out to Kansas for a mini family reunion with the Wilsons.  The highlight was joining Grandpa and “Team Wilson” for a 5k run/walk.  Rudy joined along in spirit as G’pa Dick competed with a pair of Rudy’s “running socks” pinned to his number.  Team Wilson dominated the course with Wilsons in the front of the pack, holding steady in the middle and bringing up the rear throughout the race and EVERYONE finished with a smile on his/her face.  G’pa won bragging rights as the #1 male walker of the day with his good friend Bob coming in a close second!  Olivia was determined to walk too and finished despite the heat and humidity…not quite sure what she thought of humidity (ha).  She also experienced her first Midwest thunderstorm AND the thrill of catching never-before-seen lightning bugs!

Back here in Goleta we had a full weekend of our own.  Before I get into the details I have to mention the Rescue Mission graduation on Saturday night.  We celebrated the achievements of a dozen heroes who completed their twelve months in the recovery program.  Thanks Heather, Jessica, Kelly, Nanci, Rachel, Andrew, Ben, Cal, Edward, Jay, Morris, and Sergio for being examples of how intimidating struggles are best approached by leaning on the people God has placed around you and by taking things one day at a time.  I love what I do in that it gets me a front row seat to watch lives transformed. 

Stepping back from the profound, Wilson and Max declared this weekend to be a “DUDE-CATION” as all the females in the family had vacated the premesis.  I was glad they took time to brief Rudy on the elaborate wild-man rites undertaken when boys find themselves separate from girls for extended periods of time (because I needed a refresher).  Turns out there’s quite a bit of freedom to be taken with bodily functions and noises–and more extensive and detailed conversations regarding them than I ever thought.

On a true dude-cation, all meals must  be eaten without utensils.  Considering there was toast and sandwiches in good supply, this was easily done, but I thought there would be an exception made when it was time for lasagna.  Turns out Max’s commitment runs deep, even when the melted cheese singed his fingers.

You laugh a lot on a dude-cation, which is always welcome.  True dudes also laugh in the face of danger.  While anyone can enter the pool the conventional way, it’s much more fun to do something daring:

OK, I know.  Responsible parents wouldn’t let their kids do this, but after you let them roll your six-day-old down into the OR for heart surgery your notion of what’s dangerous gets altered.  Not to mention, it just plain ROCKS!  Rest easy, there’s no picture of Rudy engaging in the ceremonial Dude-cation roof leap…yet.  I guess you’ll be sending your kids to someone else’s house when you go out of town for the weekend.

Even though some kids with heart defects can’t go to upper elevations, Rudy went on a high-altitude adventure (kind of).  Nurse Aliza spent the last few weeks hiking the John Muir Trail and took him along. 

Thanks for sporting your handsome Rudy bracelet, Aliza–Rudy and Lance make good company.  If anyone else happens to take Rudy on an adventure, we’d love to hear about it.

Lots to smile about; and nobody smiles like Rudy!

I think Rudy likes being home almost as much as we like having him here.  We enjoyed seeing him make it through his first week ever without a doctor’s appointment.  Given some of the med changes we’ve made over the past few weeks, we were curious as to what the report would be at his check-in with the cardiologist today.

We’ve gotten pretty good at reading chest Xrays, but echocardiograms are still very mysterious.  The process involves sitting quietly in the darkened room waiting as multi-colored blips flash across the screen accompanied by the sound of rhythmic pulses.  Lots of different measurements are taken and the print button is regularly hit when there seems to be a splotch worth capturing for posterity.  Only when it’s all over does the verdict come–and this time it was a good one.  Dr. Harake feels that there is nothing about Rudy’s heart function such that we need to schedule the Glenn.  Rudy can keep on enjoying life at home and continue eating and getting bigger (today he weighed in at 15 lbs 5 oz!).  His next appointment with the cardiologist is in early August so if his O2 sats remain in the 70s (today he came in at 77!) and there are no changes in his heart function between now and then, we have a real good chance of holding off on the Glenn until the fall. 

As far as the lab work, we were very curious as to his Potassium level as this needs to be closely watched and balanced for proper heart function.  Among the recent med changes, we discontinued Potassium supplements, so we were interested to see what his level was.  Turns out you not only want to see a 4.0 on your kid’s school report card; it’s also the number you want to see when your checking the potassium level in his blood.  And that’s right where it was–Rudy is doing great inside and out!

Today is a milestone day for Rudy.  He turned nine months old!  Nine months full like we never could have imagined.  In looking back over the pictures since October, the way he’s developed is remarkable, but I’m also very aware of the traits that are taking shape inside him.  In overcoming all that he has, Rudy has been a model of tenacity, perseverance, patience and contentment.  I can look at him in one light and see a frail little baby; but then I look at the way his chest pumps up and down, stretching the various scars from all of the different procedures and I see toughness personified.  He’s fought hard to get here and we are so proud of our little man.

Today is an important milestone of a different sort.  Our friends in the recovery community will be pleased to know that today is his CLEAN date.  An unavoidable byproduct of what he’s had to go through is that Rudy has not lived a day of his life without narcotics…until today.  In most hospitalizations, patients are able to use narcotics for limited periods without any lasting impacts, but given that he was there for seven months, five surgeries and all of the other pokes, prods and procedures, there was no way for him not to get addicted.  In his last few months at UCLA, the team switched him over to methadone (the slower acting, longer lasting narcotic they sometimes use to help people get off heroin).  Even this had to be weaned very slowly as Rudy had some tough bouts of withdrawal the times we went too fast.  He came home on .3ml every 8 hours (which is already very little, but too much to cut cold turkey) and we have been stepping him down about .02 ml every 5-7 days.  We brought him down to .03ml last week (a fraction of a teardrop) and cut him off today.  We stood ready with the Tylenol in case he looked like he was struggling, but he didn’t require any of it.  We’ll have to watch him for the next few days, but in the meantime I’m now looking for an age-appropriate big book in case we need to start working the 12 steps.  Anybody want to be his sponsor?

It’s great to have our little addict in recovery, but that doesn’t mean medications aren’t a big part of our life.  He’s still on 11 different prescriptions (for all you pharmacy geeks or heart parents:  Digoxin, Captopril, Spironolactone, Diuril, Lasix, Albuteral, Atrovent, Levothyroxine, Aspirin, Bactrim and a Multivitamin).  We do meds at 6am, 2pm, 6pm and 10pm.  The biggest batch comes at 6am just after the food pump alarm goes off to signal the end of his overnight feeding–more reliable than an alarm clock.  The other morning I had the presence of mind to snap a picture of our little pharmaceutical operation.  Rudy will always be on some medications for the rest of his life, but we don’t expect it to be this many and we celebrate each time we get to move another bottle over to the dormant section of his tray.  I think there’s five there now, so we’ve made some progress.  Go, Rudy, Go!