One of my favorite Seinfeld moments is Kramer reciting his mantra “serenity now” over and over with increasing frustration. You know you watch too much t.v. when you find yourself adopting coping mechanisms from a crazy sit-com character. There were a few times today when I caught myself whispering “serenity now…serenity now” as I struggled to understand the latest twist in Rudy’s journey…
I spent the morning at home finishing up a few house chores, grabbed a quick bite with Rolf on my way out of town (it was “Big Mac” Monday after all) and arrived in L.A. about 1pm. I hadn’t even set my bags down before I heard the news…fluid was seeping out of Rudy’s stomach incision. The pediatric surgical team came up right away to check it, Dr. Shew took one look at it and said he suspected it was chylous ascites…lymphatic fluid that was collecting in the cavity outside the stomach!!! Yep, for all you avid Rudy’s Beat readers, this is the same fluid that we battled for so long in his chest cavity called chylothorax. They sent a sample right away to be tested and we got word around 7pm that it is, indeed, chylous! The wretched monster is back!!!!
Rolf and I have many questions…we and Rudy’s team were so hopeful this was behind us! It still isn’t clear to me how this will effect the big picture scenario but, for now, they have stopped Rudy’s feeds in hopes of getting the fluid to stop leaking from the incision. The number one priority right now is to give the incision time to heal. If the fluid doesn’t stop soon, Rudy will have to go back to the OR to have the incision closed surgically. The chylous needs to stop completely before they’ll attempt to feed him again. Unlike the chylothorax fluid, chylous ascites cannot be “fixed” with any surgical procedure. From what I understand, it is (ONCE AGAIN) a matter of time.
This is a huge blow…we prepared ourselves for a slow back-and-forth on the feeds as Rudy’s digestive system adjusted AND a fluctuation of the ventilator settings but none of us wanted to suspect that lymphatic fluid would come into play again. This is particularly troublesome to me because Rudy battled the chylothorax for 8+ weeks!!!! Are we looking at a similar timeline with the chylous ascites? The test results came late in the day so we’ll have to sleep with our questions in mind until I have a chance to talk with the doctors involved tomorrow. “SERENITY NOW!!!”…Can I go up to the helipad and scream it from the very depths of my being????
I actually got a very timely birthday gift from Nurse Kristina last week…a little gift book from the hospital gift shop entitled “Serenity”. I read it cover to cover on Friday and a quote from the book stuck with me all weekend. The book was compiled by Sarah M. Hupp and in it she writes, “Serenity is found in the deliberate adjustment of our lives to the will of God”. So true!! Over and over we’ve had to stop, regroup, readjust our expectations and move forward ONE DAY AT A TIME. “Deliberate adjustment”, I have learned, is key to finding peace and acceptance in the midst of hardship. The events of today are asking us to take that truth to yet another level. Thank goodness God’s mercies are new every morning!
Rudy's Beat 
Hi Trish, So sorry about the set back. It seems these little people take three steps ahead, and then one back. I have the disc for you and I was hoping to come down on Weds. a.m. to see you and give the staff a little sweet surprise. It’s so odd not to call during the night, I have to catch myself…I’ll let you know for sure if Weds. will work out. Best Regards, Cindy
What a precious picture—and what a joy to see his face without all the tubes!!!! Happy Birthday Trish—I know it’s late, but just wanted you to know I thought about you and your birthday alot last week…just didn’t
get in here to let you know…hope you had a wonderful day…we keep
praying for you all…Love, Ann for the clan
Oh my goodness, Trish – that picture is just too fabulous for words. Such a sweet face, such a sweet smile, such a sweet boy. I am so, so sorry for this latest complication, and I pray with you for serenity in the midst of so much pain and confusion. Try these words from Psalm 143 (or look at any of these:6, 13, 22, 38, 39, 42 43, 69, 70, 88, 130, 142) in the depths of this night:
Lord, hear my prayer,
listen to my cry for mercy;
in your faithfulness and righteousness
come to my relief.
Do not bring your servant into judgment,
for no one living is righteous before you.
The enemy pursues me [my precious boy!]
he crushes me to the ground;
he makes me dwell in the darkness like those long dead.
So my spirit grows faint within me;
my heart within me is dismayed.
I remember the days of long ago;
I meditate on all your works
and consider what your hands have done.
I spread out my hands to you;
I thirst for you like a parched land.
Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life [and my son’s life].
Rescue me from my enemies, Lord,
for I hide myself in you.
Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.
For your names’ sake, Lord, preserve my life;
[my son’s life!]
in your righteousness, bring me out of trouble.
In your unfailing love, silence my enemies;
destroy all my foes.[including chylous ascites!!!]
FOR I AM YOUR SERVANT.
Oh dear girl, may your feet find level ground, may the Lord’s good Spirit lead you each step, one at a time – not running ahead, not lagging behind – in step with the Spirit of our Good and Gracious God. I do not know what the future holds for you, for Rolf, for Rudy, for your other fabulous children – but I know you are not going to be alone there. Oh, I am just so sorry and sad for you and for this remarkable child of yours and Rolf’s, as you both so faithfully walk this horrendous road. Oh my. Lord, have mercy.
Diana
Diana has expressed all that I feel as well. I am so sorry for this turn of events. I will pray for healing and peace and will hope that I will get to visit with you very soon. With love and prayers and blessings, Michele
Wow! The rest of us will find no better words than those above. Our prayers and love are with you and Rudy, having Faith that he will heal soon and move forward toward home.
Hugs and kisses.
ask all the questions you have, get the answers and yes scream as loud as you can….you have every right………strength……sometimes we seem to run out……prayers, HLHS Grandma, Diana
What a presious twinkle in Rudy”s eyes.
Praying oh dear ones that this latest set back will soooooon resolve.
Yes Trish and screem Bussi Oma and Opa
Yup, go scream loud and often if needed! Praying for all of you to see God at work and for Him to be at work speedily.
Oh, sweet Trish and family. The picture is priceless. As I always say, yes, ONE STEP AT A TIME!!! God knows our every thought, tears, desires, etc. I wear my Rudy bracelet every day and have shared his and the family’s story with some co-workers. Since signing up on Rudy’s Beat and reading your story, I really take nothing for granted no matter how simple (it is the little things!)!! I take things one step at a time no matter how crazy things get!! Keep the faith dear Geylings!! GOD IS IN COMPLETE CONTROL!!!! SMILE!
XOXOXOX,
TANYA
We are screaming with you! But also also praying and knowing that although bad surprises come, good ones come too. Hoping for happy surprises and speedy recoveries. That Rudy needs to be held and needs to get home! We love you!