The Big Push!

Another field trip to radiology - upper GI test
Another field trip to radiology - upper GI test

40 more minutes and it will be Friday!  We made it to the end of a long, full week.  It’s clear this week was a turning point in Rudy’s recovery.  I’m not sure Rudy’s condition has changed much but how his condition is being managed has changed dramatically.  The tracheostomy performed on Tuesday allows the team many more options in getting Rudy off the vent with little discomfort for him unlike the trauma of extubating and intubating him over and over.  Rudy is definitely more comfortable with the trach and now that the focus is off extubating him, the team has been able to tackle the feeding issue pretty aggressively.  Yesterday’s gastric emptying test and today’s upper GI contrast test confirmed that there is a delay in Rudy’s digestive system which means the best way to get feeds to his gut at this point is through a GJ tube that goes through his side and directly into his intestines.  The team is hoping the surgical procedure to place the tube will happen early next week as everyone is eager to start his feeds.  A MRI was also conducted today to look for any possible reasons for the fevers he has been getting which have compromised his recovery in general.

The big push to see Rudy past all his major hurdles is, ultimately, to get him home.  The felt need to get him home is growing increasingly urgent as we get closer to the Glenn (Rudy’s second open heart surgery).  I agree that we need to get Rudy home and I see that the steps we’ve taken this week are positive ones for him but the steps taken this week also require a huge mental adjustment in what I expected bringing Rudy home would look like.  I envisioned our elevator ride with a baby free of restraints and restrictions…not trach, and possibly vent, dependent with a feeding tube.  As much as I want to take Rudy home, I admit that tonight I’m overwhelmed and feeling alone.  Pushing to get him home does come at a cost…the burden of his care and recovery will fall on us at home to a greater extent than I expected and that’s intimidating.  Now, none of this comes as a complete surprise as these treatment options were explained to us many weeks ago as “possibilities down the road” but, of course, I hoped and prayed we wouldn’t get to this point.  I feel like I’ve been naively running this marathon for four and a half months thinking that the day we bring Rudy home will be our finish line only to find out this week that this has just been the warm up…the marathon hasn’t even begun!!!  Oh, I know, we’ll rise to the occasion, we’ll learn all we need to know to take care of his special needs, it won’t be like this forever, our family will adjust to the things that make Rudy special, Rudy WILL one day talk and eat In n’ Out Burgers with his siblings and someday I may even take a trip to Hawaii and do nothing but lay on the beach for a week, but being confident of all this doesn’t make me feel any better tonight for some reason.  I’m tired and weepy and sad and really fighting the urge to indulge in some major retail therapy. 

Enough about me and my pity party…the good news is that they started to turn Rudy’s vent settings down today, had him on an one hour sprint this evening while he slept comfortably in my arms and he has been breathing on his own off the vent completely for the past hour.  He’s doing great at the end of a full day with two field trips!!!  He’s pretty excited to show off for Daddy tomorrow.  I guess it’s time to head to bed and get some rest…”afterall”, as Scarlet O’Hara would say, ” tomorrow is another day”.

Rudy breathing on his own!
Rudy breathing on his own!

23 thoughts on “The Big Push!

  1. Darling, Trish……….My heart is heavy, too. You are tackling an unbelievable mission and I so want to take it all away from you. Please know that I pray fervently for your strength and health and for Rudy’s recovery. I know how much you need a hug right now and I how much I need to be with you. Mom’s aren’t made to watch their children struggle and we have to wait for God to “fix it”. Until then, may He give you peace and rest. Love you, honey.

  2. I can only understand a little of your heart ache, but I know how hard it is for a mother, then Grandmother to see her children and grandchildren hurt…….prayers for strength….Diana…..Dawn’s Mom and a HLHS Grandma

  3. Love you Trish and praying daily…My heart can feel you and I am weeping and being strong right along with you. I do believe that RUDY will eat in and out burgers all we will get to tell al the things that we went through as we trusted that god would bring him thru….Love you dearly

  4. Praying for endurance for all of you … Please know your friends in the neighborhood here are ready to support you however you need when Rudy does come home.

  5. A special hug for you dearest Trish, and many more.
    Its ok to feel weak, the Lord will give you the strength.
    Give that special little boy a kiss. and you extra hugs.
    We love you!!!

  6. Dear Trish-
    Sending my love and prayers for continued strength along this journey. Just to see Rudy’s face in the photos was a gift !! He is darling and that little fighter has such determination. Please know the prayers never stop for your family. Love you.

  7. Trish, I am praying for you today and that HIS strength and power will be made perfect through your weakness. I am amazed at what a fighter Rudy is, how much he’s been through, and am praying for his healing. Love to all of you — Trish, Rudy, Rolf, Wilson, Max, Olivia this Valentine’s Eve.

  8. Oh Trish, it sounds like you are on the downward hill of such an emotional rollercoaster. There are so many times of thrills and excitement only to be met with disappointment and frustrations. Rudy’s video is so sweet and he looks so comfortable breathing on his own with the trach. When the burden of your fears and realities become too overwhelming, just let them go and allow those who love you carry some of the load. Mom’s try to do everything and be everything for everybody…it’s so hard for us to admit we’re tired and need support. Rudy’s eyes speak volumes as he gazes at you behind the camera…the love is reflected in his eyes. These four 1/2 months must seem like an eternity, but Rudy has perseverance…a fight that you don’t find in many people. He wants to come home to you and his siblings, and step by step, he’s working to do that. And he’s certainly sporting the “do” that the boys around here like…the long hair!

    Continued prayers for peace from CT

  9. A good fight of faith comes to mind. Those words always do during times like this. His word seems to comfort more. He inhabits our praise, so I sing. His word says this is His day. so I rejoice. He tells me I CAN do all things through Christ who strengthens me, so I believe. But as a Mommy I certainly understand wanting to fix our babies pains….no matter how old they get either. God is with you all. Our prayers are with you too. Wish I was there to give hugs too, all of us Mommy’s do. I can’t even imagine how weary you must get. Sleep well Trish and know He is God and He is faithful. Love, Cousin Dianna

  10. I say, “Hooray for retail therapy!” I cannot think of another person I know about at this present moment who needs to do something just for herself more than you do, Trish. I also know that doing so will be almost impossible. But how I love the honesty! You don’t know me, so this may not mean too much coming from my end of Santa Barbara, but if you’re anything like 99% of the women I know who are deep into difficult caregiving situations, you need to hear this: YOU ARE DOING A FABULOUS JOB. YOU ARE STRONG, COURAGEOUS, LOVING, BEAUTIFUL, FAITHFUL. Make just a tiny space inside to take that truth in, please. This is by far the hardest thing you and Rolf and your kids have ever been asked to do, and do it you must. But keep telling truth while you do it. This ‘vacuums’ bigtime, and you need to shout it out from time to time!

    If only it were possible for the laser-like loving gaze of a devoted mom to effect healing!! There is no other force on earth more powerful and it is a gift from God. Yet, there are such limits on your powers, aren’t there? And that is so hard to take in! Please know somewhere inside that you are doing so very well at this, and give yourself permission , just for a few minutes every once in a while, to NOT be the strong one. Thank you for your report on your own struggles with the load of all this – it needs to be spoken and it needs to be heard and held in love – which is so evidently being done as I read through all these lovely comments. May God’s grace and peace surround and enfold you tonight!

    Diana T

  11. Dear Sweet Trish-Wish I were there to give you a hug and to walk over to IN ‘N Out to get a burger! Will be praying. God put Rudy with just the right mom and dad and brothers and sister. We love you guys! Brent and Judy

  12. I could not say it any better than the comments before me. But i wanted to put in my two cents of love for you too Trish…I think of the “old days” when our biggest worries were something like mid-terms at Sac, and see how God – through some much bigger “worries” – has stretched you to be one of my hugest heroes, my friend. I say that with my eyes burning from tears…wishing I could be by your side more than the one measly time I was able to be there. I can’t wait to see the pictures of Rudy with his face and hands all smeared with In-N-Out cheese (b/c, if he’s like his Dad, he’ll suck the cheese off the paper that’s wrapped around the burgers). And I know I’ve said this before, but I can’t wait to squeeze that ADORABLE boy with his AWESOME head of hair! And I have some pretty cute kids myself, but he’s definitely competing with them…

  13. sharing the ups and downs, getting the load off your mind and heart is what Rudy’s Beat is all about…it’s why it’s the first e-mail we open….to find out how he is doing and how YOU are doing and how we can pray for you and your dear family and this amazing baby boy…..

    Harriet Hughes is spending the weekend with me and sends her love and prayers , too. she also noted the awesome head of hair…..I told her it’s a family thing…

    much love, Linda

  14. Trish honey, I am so glad you can let yourself express your weepiness and fears. I am tired just thinking of all you have been through. I love you dearly and think of all of you so much.

  15. To the Geyling family,
    Just finished my daily check in on Rudy and I see the extra challenges you might come home with. I would LOVE to help!! I think you will be allowed some nursing care with the trach and GT and I would love to be one of those nurse’s that gets to take care of that beautiful baby boy! I have done pediatric home health care in the past but am now just working shifts at the hospital. I’m sure I could sqeeze in a few shifts to get some Rudy time and to give you some time to sleep! Let me know when things get closer and if a nursing agency is involved, which agency so I can go get signed up. You guys are amazing! Rudy is finding his strength from all of you as I’m sure you are finding it from him! Keep it up Geylings! We are all praying for you!

  16. Hey Trish,

    I do know you and I agree…YOU ARE DOING A FABULOUS JOB. YOU ARE STRONG, COURAGEOUS, LOVING, BEAUTIFUL, AND FAITHFUL. And Rudy is so blessed to have you for a Mom. I know your heart aches for him right now…and so does mine. Give yourself some time dear friend…to wrap your mind around what the picture may look like when you bring Rudy home. I know you will have the strength to be the Mom you need to be–God made sure of that when he gave Rudy to YOU! We continue to pray for you in this harrowing journey, dear Trish. Oh my…it’s not for the faint of heart, is it?

    May the God of all compassion wrap you in his arms! And I send my own virtual hugs to you, Sweetheart! 🙂

    See you soon!

    Lisa

  17. Dear friend, I just can’t imagine how hard this must be for your family. I pray often for you as does my husband and my bible study. I hope when you look behind you, you can see God’s footprints in the sand.

    I’m so proud of you! I often refer to you as one of the most gifted people I have ever known. One of your gifts is a spirit exuding such great joy. Even if you’re not feeling it to the hilt, it radiates from you. It is the spirit of God in you, friend. Even at this distance, I see it. I feel it.

    Happy Valentine’s Day!

    Love, Nancy B

    P.S. Love Rudy’s hairdo in that bottom picture.

    P.P.S. Wish I could go to In-and-Out, but alas, in Illinois all we can do is dream. *sigh*

  18. TOTALLY GET YOU!!!! If I hadn’t been down this same road I mean I totally understand the let’s just get him home feeling. And then the reality of wait, there is no nurse Betty here, theres no Oscar, no Rosella aaahhh it’s only me! The thing is though now you guys are gonna be home faster then you expect and then it’s all you. And of course us. We can come over and freak out with you. Of course we will celebrate but mosttly freak out. It so close now! Im grateful for know your strength, it keeps me going here at home too! Love to you all! Go Rudy Go!!

  19. Trish,

    You go ahead and vent (no pun intended!!!). Believe me, you, Rolf and your family have gone and are going through a journey that some of us cannot even imagine. As for your pity party, please! That is not a pity party, it is just you being honest about your journey! God knows, hears and will supply all your emotional needs. Remember, Jesus wept and is right along with you every step of the way. You are one strong person and a hero to so many!! Heck, next time I have a pity moment, I’ll remind my self to quit whining! LOL! God bless you Trish and all the family!! Happy Valentine’s Day and all my love to you.

    Go Geylings Go!!!

    xoxoxo,
    Tanya

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