Here’s What We Know So Far….

by

Thank you all SO MUCH for your prayers…it was a long night and we’ve had a long day of bureaucratic leg work but we’re ending the day with a neurology appointment on the calendar so we’re pleased.  Rudy woke up with a smile this morning and is particularly happy now that the big kids are home so he doesn’t seem any worse for the wear.  All in all, we’re so thankful for how last night unfolded…many blessings in the midst of the latest twist.

As Rolf mentioned, it was Wilson who brought Rudy’s seizure to our attention (BLESSING #1).  Rudy was fast asleep and Wilson went to kiss him goodnight when he noticed the excessive amount of drool and twitching mouth.  At first I thought maybe it was just a muscle spasm but then suspected it was a mild seizure when we woke him and he wasn’t responsive…it lasted about a minute.  We called (our friend/neighbor/PICU nurse) Tera to come over and help us assess the situation (BLESSING #2) and just before she arrived, he started another seizure.   Tera confirmed right away that, indeed, he was seizuring with minimal movement of his left arm & leg and began making some calls to Cottage SB to let them know we were on our way.  Rolf got on the phone to UCLA to give them a heads up (protocol for us any time we take Rudy to the ER here in town) and Dr. Marie was the fellow on duty (BLESSING #3).  Because of her first-hand knowledge of Rudy’s history, she began making arrangements for Rudy’s transport to UCLA if the situation warranted an admit.  I gathered Rudy’s equipment and we were out the door in minutes.  Rudy had a total of about 4 seizures during this time and thankfully Rolf had the presence of mind to pull out his video phone and we captured a couple (BLESSING#4) which proved helpful in the ER since he didn’t have any other episodes after that.  Rudy was pretty calm but by the time we got him to the ER, he color was concerning and he was quite distressed.  The two attempts at an IV made him epic-mad but the tantrum drained what energy he had left and he fell into a deep sleep soon after…so much so that he didn’t need to be sedated for the CAT scan.  The ER staff caring forRudy were great (BLESSING #5) and we appreciated the time the ER doc took to explain the situation to us…as far as we understand now, it was confirmed in last night’s scan that Rudy did have a series of small strokes likely caused by severe dips in his oxygen levels early on.  This is something Dr. Rick warned us about while we were still at UCLA but, at the time, this was the least of our worries so we shelved this information and there was never really a reason to follow-up on it.  Last night’s doc wondered why he hadn’t had seizure activity before this and there isn’t any clear explanation as to what triggered it last night.  Rudy was prescribed an anti-seizure drug (Keppra) to be taken twice daily and discharged.  We got home at 3am (Thank you Lisa for hanging with the kids! – BLESSING #6) – and managed to sleep a few hours.

We are blessed to have two good pediatric neurologists in town and today was spent taking the steps necessary for insurance to get Rudy in to see one of them.  We have an appointment Thursday morning at 9am (BLESSING #7 considering the next available appt isn’t until mid-June!!!).  Hopefully we’ll get more helpful information then.  In the meantime, I need to make several calls tomorrow to Rudy’s other prescribing specialists to notify them of his new medication.  We pray fervently this will turn out to be an isolated incident but, in the event it’s not , we sure want the team at large to be informed and to help us keep an eye on the big picture.  One very secondary but potentially significant silver-lining in all this is Rudy’s eligibility for CCS (Califoria Children’s Services).  He has been repeatedly denied and the last very firm, door-shut denial was due to the fact that his diagnosis did not fall under any of their neurological labels!  This new diagnosis may be the “label” he needs.  I know, it all sounds a bit twisted but maybe this will allow him to get the services we (and his therapy team) believe he needs (BLESSING #8?).  We’ll see…

In any event, thank you for praying and please continue to do so.  Our concern lies with the big kids too…we really didn’t get a chance to check in with them before they headed off to school this morning and Max called mid-morning worried and weepy. I think they are all reassured this evening but we’re all left feeling a little insecure.  I can’t believe I’m going to say this but heart issues feel so much more straight forward to me right now compared to brain issues.  I hate bobbing in unfamiliar waters…:)

Earlier in the day on Monday, Therapist Jodi successfully distracted Rudy with toys until...

 

...he realized OT Kris was getting him to stand! Ha Ha

 

I’m not sure how people will feel about the “seizure video clips” (The vote around here is: Wilson and Max think they are weird but okay to post, Olivia thinks they are disturbing, Rolf’s not home to vote).  I’m posting them below for our records…feel free to view them if you’re interested.  They are mild, focal (partial) seizures and by no means graphic from a clinical perspective but it is kind of hard for me to see the glazed, confused look in Rudy’s eyes. 

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26 Responses to “Here’s What We Know So Far….”

  1. Ana Says:

    Thanks for the update! I am bet that I can spoke on behalf of all Rudy’s fans and prayer warriors that we were anxious to get more info since Rolf’s post. Praying for the whole family. Ana

  2. Jeannine Williams Says:

    Trish,

    Just saw this and had to let you know how our hearts do ache with you and we are praying for Rudy in this new turn of events as well as for all of you! Sending you big hugs my friend! Love, Jeannine & Tom

  3. Aunt Cora Says:

    hanging with you all day in prayer and hearts… sleep well.

  4. Uncle Steve Says:

    Only YOU dear sister would take an episode like this and identify 8 different blessings!!! You are amazing!!

  5. Jen and Joe Says:

    oh boy… love you guys so much! What a journey. Praying for all of you! How scary… and yes…. God must still have His hand on you strong that you can even have the frame of mind to identify the blessings! You rock! Hang in there!

  6. Bonnie Lisama Says:

    So thankful for the many blessing that went along with this scary event. We went through a sezure scar with Teagan when she was an infant. Thanksfully that turned out well. Praying for more blessing to come from this like the service Rudy needs. That would be wonderful.

  7. Maria Doherty Says:

    Trish, thank you so much for keeping us all posted on Rudy’s journey. It really helps us to be vigilant in our prayers and for his specific needs day to day or week to week. God continues to be present in all things along this journey, even equipping the kids to be vigilant in really knowing Rudy’s needs and changes in him that to others would not appear to be anything worrisome, so PRAISE JESUS that big brother noticed and reported the seizure activity. I am so proud of him for being so loving and caring for his brother. We will continue to pray for Rudy, as well as the children and both you and Rolf. I know that this new situation is very unsettling for all, so I will not only continue to pray for God’s healing of Rudy, but for God’s comfort for all in knowing that Rudy has the best care available and more importantly that he has Jesus watching over him and that Jesus is with each one of you to help you through these difficult trials. WE love you all and keep you all in our prayers.

  8. cici Says:

    Rudy is such a sweetheart. It breaks my heart to see him not know what is happening to him. He will be in added to my Church Prayer requests, so more people join in Praying for all of you.
    God bless that little guy!

  9. Kendra Reid Says:

    Trish and family, so many blessings in disguise you could call this a stroke of good luck. The CCS criteria now should be matched with diagnosis for treatment! Rudy and you all continue to be in our thoughts and prayers.

    We love you and pray for continued great levels of interventions at the right time as our great God has directed.

    Love, Kendy and Kayla

  10. Michele Says:

    We are praying for ALL Geylings tonight as we read this!
    Much love, Michele & Bob

  11. The Nelsons Says:

    our hearts and prayers are with you, geyling family. we have been through this too, and know the heartache and fear that it can bring.
    sweet rudy, you are our hero and an inspiration. we love you and are lifting you up in prayer.
    love and hugs,
    the nelsons

  12. Kathy Says:

    I am sorry to hear about the seizure activity. Will keep Rudy and your family in our prayers.

    We have walked both the heart and the neuro road and if there is ANYTHING we can do to help PLEASE let us know.

    I was just discussing the differences between cardiac and neuro medicine yesterday with one of Garrett’s nurses. The neuro road is full of “I don’t knows” and “wait and sees” as the brain is still quite a mystery. It can be frustrating. The cardiac world is full of numbers and measures and feels much more scientific to me. It has taken me years to learn that what the CT scan / MRI / EEG say is just one part of the picture. What is most important is what Garrett can and cannot do, but it is all about waiting. I know you all are very familiar with the waiting unfortunately.

    One thing I do want to tell you, that the docs may or may not have, is that Keppra is a GREAT drug for controlling seizures which is most important but it can make some kids very irritable so keep an eye out for that. In someof the affected kids the irritability subsides, in others a vitamin B6 or 12…can’t recall which one… supplement has helped, in others a different drug might be needed. Just wanted you to know another parent’s experience.

    Keeping you all close in our prayers.

    Kathy (mom to Garrett)

  13. Pat Says:

    Just going in to Mass and will send up big prayers for all of you!!

  14. Emily Says:

    So much for such a small boy to deal with! Great job Wilson!!! Thank heaven for videophones!!!! praying for you all!

  15. Grace Says:

    You and Rolf are SO COURAGEOUS….We are praying for you as you face another twist in this journey. Thank you for the lowdown on what went down….I’m blessed you recognized the blessings in your rough night. My class is praying for you too…

  16. Allison & Mike Kenyon Says:

    We are praying for you guys, I woke up early this morning just thinking of this new territory you’re in. The fact that you are finding all these blessings in the midst of what you are learning is an answer to prayer in itself. Keep hopeful. My mom takes Keppra for her seizures…xoxo

  17. Tanya Says:

    BIG, BIG prayers going your way Trish (& all the Geylings!). I’ve been emailing the “Jesus Calling” Devotionals to U via email, but I think I may change and just post them for you here on Rudy’s Beat my dear friend!

    Love, kisses, many hugs and alot of God’s peace!!!

    Tanya

  18. Tanya Says:

    Good Morning Rolf & Family! Have a great Mother’s Day weekend!! Here are the devotionals (from “Jesus Calling”) for today and for this weekend. My prayers are with you!!!

    Today – Ole!
    Come to Me for all that you need. Come into My
    presence with thanksgiving, for thankfulness opens the
    door to My treasures. When you are thankful, you affirm the
    central truth that I am good. I am Light, in whom there is no
    darkness at all. The assurance that I am entirely Good meets
    your basic need for security. Your life is not subject to the
    whims of a sin-stained deity.

    Relax in the knowledge that the One who controls your life is
    totally trustworthy. Come to Me with confident expectation.
    There is nothing you need that I cannot provide.

    Psalm 95:2; I John 1:5

    Friday
    Do not search for security in the
    World you inhabit. You tend to make mental checklists of
    things you need to do in order to gain control of your life.
    If only you could check everything off your list, you could
    relax and be at peace. But the more you work to accomplish
    that goal, the more things crop up on your list. The harder
    you try, the more frustrated you become.

    There is a better way to find security in this life. Instead of
    scrutinizing your checklist, focus your attention on My
    presence with you. This continual contact with Me will keep
    you in My Peace. Moreover, I will help you sort out what is
    important and what is not, what needs to be done now and
    what does not. Fix your eyes not on what is seen (your
    circumstances), but on what is unseen (My Presence).

    Isaiah 26:3; 2 Corinthians 4:18

    Saturday
    If you learn to trust Me – really trust
    Me — with your whole being, then nothing can separate you
    from My peace. Everything you endure can be put to good
    use by allowing it to train you in trusting Me. This is how
    you foil the works of evil, growing in grace through the very
    adversity that was meant to harm you. Joseph was a prime
    example of this divine reversal, declaring to his brothers:
    “You meant evil against me, but God meant it for good.’

    Do not fear what this day, or any day, may bring your way.
    Concentrate on trusting Me and on doing what needs to be
    done. Relax in My sovereignty, remembering that I go before
    you, as well as with you, into each day. Fear no evil, for I can
    bring good out of every situation you will ever encounter.

    Genesis 50:20; Psalm 23:4

    SUNDAY – HAPPY MOTHER’S DAY!
    Do not long for the absence of problems in your
    life. That is an unrealistic goal, since in this world you will
    have trouble. You have an eternity of problem-free living
    reserved for you in heaven. Rejoice in that inheritance,
    which no one can take away from you, but do not seek your
    heaven on earth.

    Begin each day anticipating problems, asking Me to equip
    you for whatever difficulties you will encounter. The best
    equipping is My living Presence, My hand that never lets go
    of yours. Discuss everything with Me. Take a lighthearted
    view of trouble, seeing it as a challenge that you and I
    together can handle. Remember that I am on your side, and
    I have overcome the world.

    John 16:33; Isaiah 41:13; Philippians 4:13

    God Bless, Stay Positive, Be Strong!

  19. Diana Trautwein Says:

    No words. Just tears. And prayers. And hope, rising despite the fear. Sweet, sweet Max – in tears of worry and love. Darling Rudy, wondering what in the world is going on with him. Brave Trish, finding blessings even in this. And always honest Rolf – angry at yet another onslaught against his boy. Love you all. Waiting with you for where this all will lead, praying that it will bring the services our boy needs and that the drug will do its work with no side effects.

  20. Donna R Says:

    Oh Trish…I just got caught up on this.My heart is so heavy when I think about all that your family is carrying.I am praying…count on that…Love you.

  21. Lisa Says:

    Such a tough report…what can we say except that we will uphold you all in prayer. And we will!

    On a happier note, I love the look on Rudy’s face as the O.T. is making him stand…”Hey wait a minute…what is happening to my legs back there!?” He is such a cutie! And for those of you who haven’t gotten to see him in person lately, he is as sweet as he is cute! Love that boy!!!

  22. Jenna Says:

    Hi Rudy and Family
    My name is Jenna and I came across your site. Rudy, is one amazing brave courageous fighter, and a real inspiration. U is such a determined, brave, inspiring, courageous, strong, smilen hero.
    I was born with a rare life threatening disease.

  23. Grandma Jo Says:

    My mind is racing with “what ifs”……but my heart tells me Jesus is with you every stepof the way! We trust in Him!!!

  24. matt pape Says:

    Hi rolf, trish rudy and family, my name is matt and I’ve been following your site for a long time now. Like rudy, I have chd, and I am a survivor like him. I have tetralogy of fallot and am a patient at ucla. This news is hard, but rudy is a fighter and I know he won’t give up.

    If there’s one thing I can say its this, always have hope, and live each day to the fullest, and have fun, enjoy life, and laugh, because you never know when it could be over.

    Your family is amazing, and were all praying for rudy.

    Matt pape.

  25. matt pape Says:

    Trish, rolf, rudy and family, my name is matt and I’ve been following your site for a long time now. Like rudy I have chd and I’m a survivor just like he is. I have tetralogy of fallot and am a patient at ucla.

    This news is hard, but I know rudy is a fighter, and will fight through this.

    I know life with chd is tough but what I can say is this, always have hope, and go out live each day to the fullest, enjoy life, laugh and have fun, because life is too short.

    Your family is amazing, praying for rudy, and your family.

    Matt pape.

  26. Jan and Lyle Burden Says:

    We don’t write often enough to let you know we are always praying and look forward to every Rudy’s beat. How you have included and helped the “big kids” in the love and care of Rudy is a big credit to your parenting – and the love and compassion they give to Rudy, is such a blessing.

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