May 4, 2013

UPDATE (5/4/13)

I’m not even quite sure how to begin this post. Beckett is “ok”, but he is just withdrawing soooo hard, and it’s soooo heartbreaking and draining….and to be quite honest, it’s even scary. Leah and I keep saying, “we’ve been here before”…and it wasn’t something we were eager to return to. Where it gets so scary is that Beckett is often too underestimated and often treated like a “normal” baby when it comes to doses of medicine, or wean schedules, or even his irritability. In fact, one time a doctor questioned my concern of his withdrawal to “normal 4 month old baby stuff”. And I understand that he may exude signs of normal baby behavior, but not necessarily when he’s been weaned off of nasty narcotics and demonstrating abnormal behavior…even for him. Either way, and like I said before, Leah and I just get a little “on edge” when heavy doses of deja vu begin to set in. We begin to see his oxygen support continue to rise, his heart rate then follows that same trend, and before you know it we are “beyond the point of no return” and the nasty word “REintubate” creeps its way back into everyone’s lexicon. That would be a huge step backwards, and we keep begging for the physicians to continue to brainstorm ideas that aren’t necessarily “textbook”. For example, the pharmacist’s original plan was to wean Beckett off the fentanyl .25 EVERYDAY. I remember thinking, please no! I had to advocate and request for at least an every-OTHER-day wean…which we were ‘t even able to stick with this past week. I think we actually only got 2 official weans in (as in, he’s down a full .5 from 1.75). And even that has been extremely difficult for Beckett to handle. This week confirms my pessimistic concern that we will definitely still be here (in the Hospital) for a while longer. I surely hope I’m wrong, but I’m concerned I am not.

Sooo, here we are…fighting right alongside of our son. Praying for healing, trusting in God’s sovereignty, and reaching personal limits quicker than ever before.

Exodus 17 has never been more applicable in our (and certainly Beckett’s) life. We feel the need and assistance of “Aaron and Hur” like Moses did when fighting the Amalek.

Exodus 17:11-13
11 Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. 12 But Moses’ hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. 13 And Joshua overwhelmed Amalek and his people with the sword.

As stated in previous posts, we depend on The Lord for our strength. He DOES “give” us more than we can handle, and that reminds us of our complete and utter dependence on Him.
(Please reference the January 29th post:
However, that support may come from others as well. We continue to welcome in the most selfless way we can the prayer and support from you all (as you have been so diligent and generous throughout this entire journey). Leah is back to work again tomorrow, I then leave for home tomorrow night when she makes the two hour drive back here to Indy. We are overwhelmed with the balance of immediate responsibities, let alone additional issues like our roof leaking at home, we now found out we have to replace our bathtub (cause its leaking), and we are receiving bills in the mail with 7 figures on it. But God is good, I KNOW he’s in control, and I’m genuinely trying to welcome the trials at hand, as these will only strengthen me, my wife, my family, and even my son! We are also not ignorant to the impact Beckett’s journey and story is having on so many others…many whom we’ve never even met before.

Thanks everyone. We truly love you all (and I don’t just say that because it seems like a nice way to wrap up a post). We are forever indebted to your care and support!


— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

7 thoughts on “May 4, 2013

  1. Child of God says:

    Yes, God does give us a lot and often more than we can handle but He is always there for us and has promised to walk it through with us. Actually this verse below is often misquoted with temptation being replaced by does not give.
    1 Corinthians 10:13
    No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.

    This is a hard road but you do have the right attitude and I encourage you to continue to seek Father and trust in Him to provide. A humble and contrite heart, obedient to the Word of God, seeking to please and honour the Lord will allow for Father to move in your life.

    Continuing to pray and pray for Beckett and you and your wife.

  2. Praying for you all daily. Check out Our pastor is preaching tomorrow on Exodus 17! If you can’t watch the. Ideo, you can download the sermon notes. May it bring encouragement for you on the journey. Trusting God for your miracle.

  3. Elaine Parrish says:

    Daily prayers continue. I was just thinking during my prayer yesterday that Beckett is probably teething, which is adding to his irritability . That being said , stay strong. YOU are his parents. My pediatrician always says” If a parent says something is wrong, something is.” Voice your concerns, do not let any Dr. talk over you. You know the history, and your child. The Drs. Are fabulous , but are “practicing” medicine.
    Prayers for healing and patience. Pray the Drs. listen and are empathetic.

  4. My mind immediately goes to a quote I’ve written before…when words are most inadequate, tears are most apt…and tears are flowing for your little Beckett and all that your family is going through. It is so hard to understand the tapestry that God is weaving when we can only see it from the underneath side and God sees it from above. You are so right, we do get more than we can handle. Someone told me years ago that God wasn’t giving me more than I could handle. I didn’t believe it then and I still don’t believe it. What I do know is that somehow God gave me the strength I needed just when I needed it to make it; and He brought others into my life to hold me up literally and figuratively. Believe me…be assured…that we are begging God, pleading with him throughout every day to give your precious little Beckett and your family a miracle. Keep hanging in there and we’ll keep praying and holding you up. Much love to the 3 of you…

  5. Doris Wallace says:

    I am not sure you have been getting my replies since I am definitely technically challenged when it comes to all the zillion social media outlets! But, I am repeating one thing…as far as I am concerned, you and Leah are way beyond your years when it comes to spiritual maturity. Your blogs are part of my daily devotional life. God bless and continue to keep you in the palm of His hand, which is large enough to hold 2 big people and one wee one!

    • Hi Doris! We have gotten every post you’ve done, and they are very encouraging and inspiring. Thank you so much for all your prayers and support!
      Jonny (& Leah)

  6. Jamika Mitchell says:

    Gods grace is sufficient! He is Awesome!

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