July 4, 2013

UPDATE (7/4/13)

Happy 4th of July everyone! Yet another holiday we are privileged to spend with our son celebrating our independence and those who fought/fight for our freedom.

We’ve been told that the fireworks here in Indy are pretty awesome. Sooo, the current plan (if Beckett allows) is to possibly escape for a few minutes to the roof of the parking garage here, in which we were told has a surprisingly good view of the fireworks. I’m looking forward to it as a time of reflection and celebration of life and freedom.

Sooo, here’s some fun news…Beckett opened his eyes! The last few nights we were able to stay in a room here at the hospital. Late last night, Leah went back up to Beckett’s room an returned with the news that he opened his eyes! That was exciting news. Then he did it again today. Then again. And again! It’s actually quite funny. I warned the PICU Physician that he has a terribly high tolerance to pain meds, and they are learning quickly that we were not exaggerating. One nurse wrote on Beckett’s board under a section titled “What you should know about me” — “I sure like my methadone.” Funny, but sad. I hate this phrase, but it’s sooo applicable…these pain meds truly are a “necessary evil”. Anyways, they are working on continuing to tweak his meds, and some meds have actually already been weaned off! That’s fantastic!

We were, however, informed that they almost reintubated Beckett last night. I guess he desatted as low as the 30s, but they decided to try to put him on a Bipap machine at first, then they switched him to a Cpap machine, and by the time we were in his room this morning he was only on the VapoTherm (but at a flow of 20!).

He’s doing relatively well, actually…but we still have a ways to go. I cannot believe its been more than 48 hours since his surgery! I am so proud of him and his progress. He’s such a strong boy. Though we continue to “hold our breath” here-n-there, we are beginning to receive a glimmer of hope that Beckett is trending the right direction. One step at a time.

#GoBeckett
#ODAAT

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

3 thoughts on “July 4, 2013

  1. You are so awesome Beckett! Way to go big guy! So proud of you.
    Keep hanging in there and we’ll keep praying for you.
    Go-go Beckett!!

  2. Chris Wilson says:

    My nephew and his wife Kevin and Elizabeth Seibert delivered their baby Hudson Joseph in Ann Arbor on July . He has the same heart condition as Beckett. I think the have been in contact with you prior to the birth. Please pray for little Hudson as you know the challenges they face. They live in Archbold.
    Our daughter Bethany is married to Jonnys cousin JJ Rupp. We met when you visited the day we moved her into her apartment for her senior year at Taylor University.
    I am praying for Beckett. He has the most beautiful eyes!
    Chris and Lee Wilson

  3. doriew says:

    Praise God from whom all blessings flow….I hope the surgeons know that what they do is only as a holy God directs their every move. His will is always best, and it would appear that handsome Beckett fits perfectly in the hollow of His hand!

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