Yesterday’s appointment with Dr. Harake was full of smiles as Rudy’s echo, once again, looked solid and his O2 sats registered at 85%! (Rudy always has high sats in the cardiologist’s office…they must pump extra O2 through the office air vent system or something) Yesterday’s appointment also marked our last scheduled doctor appointment before Christmas which means Rudy’s singing “I’ll be home for Christmas…” and I’m looking forward to a respite from medical offices for a couple of weeks. I did, however, look ahead to my January calendar and realized the week of the 5th has an appointment each day of that week including a trip to UCLA to see the pulmonologist! Oh well, that’s next year…we’ll hit 2010 running! Ha 🙂 You know what they say…”New year, new out-of-pocket maximum!”
After talking with the team at UCLA, Dr. Harake feels our next step is to schedule a heart cath for Rudy in mid-January which will give everyone involved detailed information on which to base their decisions regarding the Glenn. Rolf and I feel great about this plan and although the heart catheterization is an invasive procedure, we value deeply the information gained from it and appreciate the team taking measures to be as informed as possible before opening our little man up again.
We’re still having to suction Rudy pretty regularly…I’m wondering now if it’s not due to some bug as no other symptoms have surfaced but rather maybe because of changes in our weather (thicker marine layer, cooler temps at night) and also maybe because he is simply more active these days…awake for longer stretches of time and quite the vigorous kicker! Rudy received his 2nd H1N1 vaccination dose this week so I believe he is well protected from the flu now…the only vaccination he hasn’t been able to get yet is the one for RSV. His docs here in town hoped to start the 5 dose vaccination back in October but because of a hiccup in the authorization process, he still hasn’t gotten it! This was of concern to Dr. Harake and Dr. Abbott at this week’s appointments so superstar nurse Melody got on all the parties involved and it will hopefully be available the middle of next week. (Oops, I guess we do have a quick dr. visit next week afterall). It will be a relief to have that vaccination started as Dr. Harake has seen RSV undo in other patients the kind of progress Rudy has made…a foe Rudy just doesn’t have the reserve to fight at this point. So, we continue to pray diligently for a covering of protection for Rudy…may he be our spiritual “boy in the plastic bubble” until we get past the winter season.
Speaking of superstars, Nurse Elaine from Dr. Pornchai’s (UCLA pulmonologist) office has worked MANY hours on Rudy’s behalf trying to get a prescription for trach supplies filled by our friends at APRIA. Rolf and I have purposed to not use Rudysbeat as a laundry list of complaints and rants and thankfully, there has been very little about which to complain in our journey but the lack of follow through and chronic mistakes made by APRIA has gotten to the point where we’re asking oursleves “Are we on candid camera?”. If I were famous, I honestly would expect Ashton to pop out of the next APRIA delivery truck screaming “you’ve been punk’d man!! The prescription was actually originally written back in April by Rudy’s ENT doc, followed up by another prescription in July from his pediatrician and then in October by Dr. Pornchai!!! And, seriously, we’re not talking about random, obscure items here. Well, EUREKA!! This week we received a delivery from APRIA that included the HME trach filter we’ve been waiting for since April. I emailed nurse Elaine right away to tell her the good news and ask for specifics on how and when to use the filter, etc. “How long does the filter last?”, I wrote. “Filter?”, she responded, “Isn’t it ‘filterS’. You should use one filter a day…they should have sent you 30 – a month’s supply!”. OH MAN…another call to our helpful friends at (cr)APRIA!!!
As a result, Rudy has a unique Christmas list for Santa this year…with Apria’s current success rate at actually getting something right where Rudy is concerned, I have more faith in there really being a Santa Claus who keeps a well-stocked supply of medical equipment and supplies next to the warehouses of toys.
RUDY’s CHRISTMAS WISHLIST
1. A big, red ball 8fr red robinson catheters
2. A cuddly teddy bear sheets of pink poly-mem Quadrafoam
3. bb gun 10cc saline bullets
Ho, Ho, Ho!
Rudy's Beat 
Hoping Santa brings all items on Rudy’s wishlist! Great photo and LOVE Olivia’s hat.
Oooh, the joys of dealing with med companies. LOVED the addition to their name – one of my very favorite epithets ever – and so nice to see it so very well-used. :>) Thrilled that your boy is home for the holidays in every possible way. Enjoy, enjoy.
I was WONDERING what to get him for Chrismas! I’m sure there’s some extras somewhere in my stash…
SO HAPPY you all will be home for Christmas!!!!!! I pray it will be a wonderful one!!!! And praying for continual patience and hope for the road ahead….
you are superstars at making lemonade out of lemons….I know making a ‘kind of’ joke out of these ongoing glitches (who do these people hire, anyway?) keeps your positive factor higher, but this is critical, folks. I think in the long run, your attitudes keep you sane! you are a witness to grace under pressure….
and, you have reminded me not to whine about why I don’t have my Christmas cards done yet (don’t even have an idea yet…) I can’t even imagine your level of “busy” !!
xoxo to all Linda
Praying for all your needs. Hope Rudy gets all his needed medical supplies and not just for Chritstmas…. Hope they fix their mix up soon.
Praying for a wonderful Christmas at home with your whole family Rudy. Sending you hugs and kisses as always.
Love from all the Lisama’s
I did a Bing search and Santa Claus (IN) and the North Pole (AK) don’t have those supplies on hand yet… I’ll be sure to send a note to the big man reminding him that APRIA should get some ‘Rentiere Gülle’ in their stocking…
Maybe if we write Santa’s cousins, they can help get those items to the sleigh in time: http://www.dr-claus.de
–steve
Hi! We’ve never met, but have fallen in love with your dear Rudy. Dar’s roommate Chelsey showed us the blog, and we are really privileged to pray for Rudy. He’s so beautiful as well as the rest of your family. I mean seriously cute. My daughter Daisy is 5 and has cancer and has experienced so much answered prayer, and is really joyful in praying for Rudy. It’s really a blessing for her to have an opportunity to share compassion and take her eyes off herself. My kids love watching Rudy be cute and smile, so thanks so much for sharing your journey. oh, and your going home pics made me weep! you guys totally rock… Blessings upon blessings to your family, so much love in Jesus
What a beautiful, priceless picture! I have the biggest smile on my face!!! You are one special family in my heart!
Much love,
Ginny
What a blessing to have the Rudster home for CHristmas! I love your attitude and humor through all of this and I love you guys!
Our pastor has been giving a series of sermons on “waiting” and we learn it is what life is about until Jesus comes again. In the meantime, we continue to have faith and hope for all our needs–that is the promise. Continue to exercise your marvelous measure of faith, dear ones. We love you!