An Action-Packed Monday!!!

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Today has been a fast-paced day and I’m not even sure what kind of time I have to post right now, but so much has happening I don’t want to be incommunicado with all our fans out in Rudy-land.

Today started with a bit of a wrinkle (actually more than a bit of one) when Gwee, our discharge planner, came in and had to tell me that there was NO WAY Rudy could go home on Tuesday.  As there was quite a bit of back-and-forth among the medical teams and the discharge timeline only came clear over the weekend, there were details regarding home health care and equipment that hadn’t been lined up yet and there was little-to-no chance that the agencies, appointments and insurance approvals could be lined up in one day.  Needless to say, I was a bit dismayed hearing anecdotes about patients being kept at the hospital for days simply waiting for all the home care arrangements to be set up.  Over the past six months I’ve learned there isn’t much to be won by griping about or fighting the system–you really just need to do everything you can to get it to work for you.  It would have just been really depressing to have the day we’re waiting for put on hold for something other than Rudy’s condition, but the team here is also not about to do anything to jeopardize the amazing progress he’s made.  They couldn’t let him go home without being certain that a home care agency was in place with all of the necessary equipment, so I had to call Trish to delay her departure.  Bummer.

The sticking point was securing a pediatric home health nurse to get us set up on one day’s notice.  I didn’t know I had “people”, but it turns out I do.  I left a message for our friend Tera (a PICU nurse in SB) and she called back in short order with good information on an agency with nurses she knew well (yeah, Tera!).  One phone call later saw me bounding  through the unit to let Vicky and Anita (cardiac Nurse Practitioners) know that we had an appointment for 4pm tomorrow.  Not quite sure how I did it, but I’ll credit the hand of providence–the discharge folks had called the same agency and had no luck.  Doesn’t really matter–I gave Trish the go ahead to start rolling.

Rudy’s been wonderfully stable all day–he’s doing fine on room air with no oxygen.  In between discharge briefings and demonstrations of my nursing proficiency, the stream of farewell visitors began passing coming by as staff who aren’t going to be here tomorrow wanted to come wish Rudy well.  It was a fantastic afternoon, so Nurse Shelly got me and Rudy set up for a trip to the patio, but this time it was much more simple–no monitors, no oxygen, no nothing.  It took me awhile out there before I realized I could just pick him up and walk around, which is how Trish found us.  You celebrate the simple things, like being able to hold your baby and spin around without having to worry about getting tangled in lines.

Right now it’s well past midnight and we’ve got to try to get some rest, but I’m not sure how much sleep we’ll get–just too much adrenaline and expectation.

Random observation:  The length of our stay here was brought forth in a new way when I encountered Dr. Federman here in the unit this morning.  She was attending the week we brought Rudy into the unit and about to go on maternity leave.  You know you’ve been in the hospital for a very long time when your stay elcipses the maternity leave of one of your doctors…

Stirring reality check:  I was eating take-out down in the basement lobby last night when I was approached by an unfamiliar couple asking me if my name was Rolf.  They went on to say that they had come across Rudy’s Beat in researching treatment options for their own unborn baby and our story had a part in bringing them here to UCLA.  There little girl was born a week ago and is now in the NICU.  In just the brief chance we had to visit before they made the walk off to Tiverton House to spend the night apart from their little one brought on the unique experience of feeling wildly divergent emotions that is part of life in these realms: joy for progress, empathy for another’s struggle, comfort in finding others whose eyes communicate more deeply than words ever could.  Our celebration over our departure from this battlefield is genuine, but at the same time burdened for others who engaged in their own fights.  Hang in there, Shawn and Anna–thanks for saying hi.

Tuesday will be a big day and it’s highly unlikely we’ll get to posting anything, though we may try to give remote updates on status.  In addition to the discharge conferences, we’ll spend most of the day saying goodbye to the exceptional group of people who have come alongside us on this journey.  By way of tribute, we’ve compiled a photo album of those we’ve been able to capture over the last six months.  We can’t say thanks enough!

Team Rudy

(it may take some time to load, but then enjoy!)

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21 Responses to “An Action-Packed Monday!!!”

  1. amy fiorillo Says:

    There is so much emotion on this end for you guys. Tears of joy. You have all waited a long time for this day and I am so happy that the day is here!! Have a safe trip home.

  2. Dawn Bettencourt Says:

    what a crazy world….I know all about home care, etc….although it was always with older loved ones……all I can say is……….many prayers are sent your way……continue to think of your entire family……….family it is……..go Rudy go……..Dawn’s Mom

  3. oma+opa Says:

    Oh what a special day!!!
    Prayers for a safe trip —- I want to be there to see the joy on your faces!! and the kids too when you walk into the house.
    Blessings and love Bussi Oma + Opa

  4. Dawn & Steve Bettencourt Says:

    Tears of joy as you take this long awaited trip home! Love and prayers to all from CT.

  5. Nicole Kane Says:

    Rudy’s CT fans are soooooooo happy that he gets to take that elevator ride today! You all will be in our prayers.

  6. Pat Says:

    Gosh! I have tears in my eyes after that slide show. Prayers for your journey home! God be with all of you.

  7. John Roberts Says:

    Yes!! He is about to get his first car ride today.

  8. Kelly Says:

    Sweeeet! Answered prayer. Enjoy that elevator ride!

  9. Grace & Marlin Says:

    Spin! Dance! Ride! I’ve got goosebumps!!!! I can’t believe the day is finally here!!!

    Oh! you will be so missed by the hospital staff I’m sure!

    So wonderful that you are the type of people that can take time to console and encourage other “HLHS families.” You are touching so many people through all this…..

    Bon voyage!!!!!

    The Van Fam

  10. Uncle Steve Says:

    Never a dull moment with Rudy! How exciting! I cried this morning in our staff prayer meeting as I thanked God for His faithfulness over the past 6 months. Looking at the picture gallery of everyone who has been involved in Rudy’s care, I’m reminded of my thoughts 9 months ago that God would use this experience in a mighty way to glorify Himself—and then to see all the people that have been involved, not to mention all those who are following Rudy’s Beat — All of whom are experiencing God in action! WOW!! What an awesome and amazing God!

    Enjoy the day – all the goodbyes and blessings – and know that there are countless folks out in Rudy-land that would love to be there with you cheering you on — not the least of whom is me!!

    PS – Can’t wait to see the video of the elevator ride – ENJOY!

  11. Cousin Dianna Says:

    Looking at your slide show brought it all back from our view. What an incredible journey. It has truly been a walk of faith. You both have walked the walk and talked the talk through it all. To think looking at the pictures of Rudy and all he has gone through,….he won’t remember it. Praise God for that. There is a pride having watched your family through this. You are such witnesses for Christ and building our faith each day as we watched and listened to you share your hearts. And NOW….oh boy, oh boy, oh boy, the elevator ride is coming, the elevator ride is coming! Yahoo! God is SO GOOD! Love Cousin Dianna

  12. Sarah Bradford Says:

    Still Rudy Tuesday to me! Love you guys! Safe trip home! Can’t wait to see you in SB.

  13. Uncle Alex and family Says:

    Yeah Rudy!!! Have a safe trip home and enjoy the scenery!

  14. Emily Ricter Says:

    Enjoy YOUR elevator ride!! Sending lots of prayers and love your way.

  15. Allison & Mike Kenyon Says:

    So excited for you all! Goleta here you come, Rudy! Will keep praying for you, have a very happy first Easter at home! Wish I could be a fly on the wall (a non-infectious germ-carrying one) to see all the fun and excitement happen today, but since I can’t, please take lots of pictures and video!!! Love you!

  16. Logan, Kaelee, Emma, Brett and Rayme Says:

    HHHHOOOOOOORRRRRRRAAAAAYYYYYYYYY!!!!!! Great job Rudy!! What a strong boy you are. We are sooo looking forward to playdates with you! We love you and are so proud of you! Cant wait to have you home!! xoxoxo LOVE YOU TONS!!!!

  17. Laurette Connelly Says:

    Wow! Congratulations! May the Lord surround your home with His mightiest angels to watch over Rudy and bring great joy to your family as you are one family together at home.

    There’s no place like home!

  18. Renee Curtis Says:

    Was just prusing the tv and eating my chocolate and vanilla sunday when what should appear but the movie RUDY! Classic! Rudy is a fighter and it’s been awesome to see it! I can’t stop thinking about all of you at home together…the joy, relief and stress! I’m praying for God’s confidence and peace as you watch over this precious one. Goodnight! xxooR

  19. Yvonne Lierz Says:

    Oh what an exciting day. I am so happy for all of you.

  20. julie donnelly Says:

    Oh I am overwhelmed with the goodness of the Lord! I am so glad the elevator ride took place before Easter!Prayers are surrounding Rudy and his awesome family as he makes himself comfortable in his new digs!
    Blessings,
    Julie

  21. Lyle and Jan Burden Says:

    We share the joy of Rudy’s homecoming with the dozens of people who have been blessed by the daily accounts of his and your journey. Our daily prayers for all of you will continue. We expect to follow Rudy’s and your family’s jouney right up until college, marriage etc. You have a big assignment now – see what all this started!:-).

    You have given us a precious gift to make this whole story of Rudy the hospital, friends and relatives visible and personal. Thank you for sharing your lives with all of us. Big cheers for Max, Wilson and Olivia
    who have been awesome.

    Love to you,

    Jan and Lyle

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