VIP Treatment

(If you haven’t noticed already, I’m dealing with my nervous energy today by playing with iPhone apps.)

VIP perk #1: they usually let only one parent escort to the lab, but we both got to go.

VIP perk #2: Yes, they totally let us keep the monkey suits!! We’ve found that if you wear them in the cafeteria you can sit anywhere you want. People totally move out of your way.

Signing off for awhile. We were told to expect a status call around 10am.

Anxious for Thursday…

We set the appointment for Rudy’s next heart cath early in the summer.  October 21st was such a long way away.  Now it’s almost here–and with it a good dose of anxiety.  Back in January, his last cath showed that he was “not a good candidate” (read he wouldn’t survive) the Glenn surgery that his heart needs.  The pressures in his lungs were too high (pulmonary hypertension) and they weren’t fully oxygenating his blood.  The team was hoping that there would be enough time (at least 2-3 months) for two medications to address the hypertension and to overcome his lung damage.  As we’re always on the lookout for the little miracles along this journey, we recognize one in that his little half-heart has kept right on chugging along to give far more time for all this to work…if it’s going to.

So the challenge lies in not letting our minds get swept up in all of the possible scenarios.  What if the medications didn’t work?  What if the lung function hasn’t improved?  What if they find something else?  What if they decide it’s time to do the surgery?  You don’t want to prepare yourself for the worst; but hoping for the best seems risky given the potential of a let down.  When we look at Rudy and the way he’s developing, we really want to assume things are favorable, but heart kids are tough to read and Rudy has proven to be unique beyond that.  Until we get good data from the cath, we just won’t know.  So, we get sleep when it comes and try to keep our minds from wandering farther than they already do.  We’ll have the information soon enough.

We’d appreciate your prayers for Thursday.  We’ve got a 6AM call time at UCLA, so we’ll roll out of SB at four.  If they do any interventions (angioplasty or coiling collateral veins), we’ll have to stay the night.  This is what we’re preparing for as his last two echos might indicate a narrowing of the aorta that may need to be opened up.  If they don’t see anything to address, we may be able to get out by the afternoon.  We’d appreciate your prayers for a good outcome:  1) for those lung pressures to be nice and low so Rudy would be able to handle the Glenn circulation, 2) for the blood to be fully oxygenated as it’s leaving the lungs and 3) for Rudy’s comfort and safety during the whole process.

Request #3 is especially poignant to us due to his development over the last year.  He is so much more active and so much more aware of his surroundings.  During his extended ICU stay and most of his follow-up procedures, he was relatively passive and calm.  But that isn’t the case now, as evidenced by our ECHO appointment with Dr. Harake this week.

 

Sure, he looks very cooperative...

But then he got pretty feisty.  I think the paper on the table makes cool noises.  Given that an echocardiogram is supposed to give somewhat detailed and precise measurements of the heart, I marvel at how Dr. Harake accomplished this.  I wasn’t able to video any of the actual test because I had to hold Rudy down (picture calf roping at the rodeo and you’ll get the idea).

Praying that this spunk will carry him through.  Thanks for walking with us.  We’ll post updates Thursday as we have them.

Another “First”

A quick visit with Susie-Q!

Our string of very special guests (that began last May with Rolf’s cousins from Germany) ended this weekend with a visit from our friend Susie…particularly noteworthy as she is Max’s godmother and now lives in Kansas so we don’t get to see her very often.  Reconnecting with old friends with whom you have special, shared experiences always brings an extra measure of comfort and reassurance, for some reason.  🙂  We’re glad for this time with Susie-Q.

This weekend also held “a first” for me, Rolf AND Rudy…Thanks to Rudy’s connections, we were invited to a Hindu wedding.  Dr. Sonal Ram (yes, one of Rudy’s docs at UCLA) married Dr. Robinder  Khemani (an attending at Children’s Hospital L.A.) in a tradional Hindu ceremony on the most beautiful farmhouse property in Los Olivos.  We were honored to be invited.  My fears about being in a remote part of the Santa Ynez Mountains miles from any medical help were quickly relieved when we realized that there were about 300 medical professionals among the wedding guests and 6 (or more) were a part of Rudy’s team specifically!!  Ha Ha  What a treat it was to steal away to a magical place for a few hours and nurture relationship with some of Rudy’s docs & nurses OUTSIDE the context of a hospital – a rare opportunity, indeed!

Dr. Sonal and Rudy February 1, 2009
Dr. Sonal (and her brother) on her wedding day!
A beautiful backdrop!
Drs. Sonal and Roby
Reunited with some familiar faces 🙂
Is there a Dr. in the house? Yep, Drs. Myke, Julianne and Ryan
...and dear Dr. Rick!
See you again on Thursday Dr. Rick!

Our journey with Rudy brings a richness in relationship and new experiences…on all kinds of levels.  Another “first” for which we are grateful.  Congratulations Dr. Sonal!!

EXTRA! EXTRA! Read all about it!

Well, I finally figured out/got around to posting the article that ran in last week’s Santa Barbara News-Press about Rudy.  Needless to say, we’re still pretty tickled about it!

Click here to read:

NewsPress10-10-05

Grandma Jo got a taste of celebrity on her plane flight from SB to Denver.  Her travel neighbor was going home after visiting her daughter in Santa Barbara and when it came up in conversation that Grandma Jo was in SB visiting her daughter’s family and grandson who has half a heart, the woman replied “is that the boy who was in the paper?!”.  Ha  Sadly, Grandma Jo returned home to Kansas on Wednesday.  Rudy is missing his playmate.  🙂  He liked all of Gma’s songs and games.  And, now, after a string of really big events, it’s back to the regular routine on the homefront and preparation for Rudy’s heart cath next Thursday.  ‘Heading into another big season…

 

Thanks for a fun visit Grandma Jo!