April 21, 2013

UPDATE (4/21/13)

Beckett has had a good day. Let’s begin like that. We came into his
room this morning to be greeted by another new nurse practitioner. She
was reading through his meds and mentioned that Beckett’s milrinone
was scheduled to be weaned again today. Needless to say, that caught
my attention. I couldn’t help but to inquire about the need to wean
him off of a medication that seemed to be the primary cause for his
“episode” on Friday. I was under the impression that the plan was to,
as the Cardiologist said, “Let the dust settle this weekend”. A wean
right now didn’t seem to fit the mutually understood agenda. The nurse
practitioner was very patient with my concerns and assured me that my
questions are valid and she’d be more than willing to contact
Cardiology for me. A few minutes later I was then on the phone with
one of our (many) Cardiologists. It was actually a very pleasant
conversation as I attempted to politely state my concern yet reinforce
that I want to trust his judgement with my son. We agreed to wean his
milrinone just a very little bit today (.1), but found a compromise to
wean the milrinone every other day, rather than his proposed plan for
every 24 hours. I respectfully said that “Whatever speed you guys
determine is slow for Beckett, go just a little bit slower than that
and you may be getting close to an appropriate speed.” I’m just trying
to do all that I can to advocate for him as a parent, but trust and
respect their professional and educated decisions. It can be
difficult, but both Leah and I have been reinforced multiple times
today that we “aren’t those parents”. The Cardiologist and the nurse
practitioner assured us that if we “were those parents”, we’d know it
by-way-of restrictions, mandatory parent/doctor conferences, etc.

Either way, Beckett seems to be doing much better once again. As Leah
mentioned yesterday, and as I hope you’ve had the chance to see from
the posted videos, Beckett is still such a little cutie. He’s “talkin”
a lot more and is actually doing developmentally impressive things
like playing with his toys and even clasping his hands together across
his chest. This is all really encouraging and just the cherry-on-top
to his overall recovery.

We hope for fewer (or NO more) set-backs from here on out. But we
continue to enjoy the day at hand and truly accept it as a gift, and
not something we deserve. I’m blessed to have an amazing son and a
wonderful wife. And we are also consistently reminded that our vast
support system (you who are reading this right now) is not necessarily
normal. We are so blessed to have so many people following, praying,
giving, visiting and sharing this journey right alongside of us. I
hope that we never post an update with a tone that takes any of that
for granted. And to our God and Savior, You have never been so “real”
to us in our lives as you are now. We are reminded that suffering is
apportioned to us as individually designed expert therapy…it is not
a punishment. The purpose of any trials or suffering is that our faith
may be refined, holiness might be enlarged, a soul might be saved and
that God may be glorified! To God be ALL the glory!

Please pray as Leah heads back to work once again tomorrow and as I
wrestle with finishing these next few weeks strong in my studies. But
truly more important than that, please continue to pray and plead for
Beckett’s healing and to welcome the Lord’s will to continue to be
done in and through his life!

#ODAAT
#GoBeckett!

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

3 thoughts on “April 21, 2013

  1. nicole says:

    AMEN AMEN AMEN!!! I totally know how you feel, if only for a fleeting moment by comparison! But your excitement for the milestones in what a lot of parents take for granted is so refreshing to me! You brought me back to the moment that I caught my alex “recognizing his hand” and then stopping to check it out and really look at it! And this same stage of development when they bring their little hands together in midline which some of us have to “fight for” with therapy upon therapy! We will not take for granted every little step of the way! I wish I had journaled as you are blogging because now almost 12 years later…it’s getting further and further away. love you guys!!!

  2. Wonderful pictures of your adorable son. And rejoicing with you as you are able to experience the joy of watching your son discover his world. Definitely lifting you and Leah up in prayer as you have to continue with normal life responsibilities. And of course always praying for the complete and total healing for your precious son. Keep going little Beckett!

  3. Child of God says:

    Thanks for sharing those videos and the pic. Beckett is adorable!! I can see why so many people just love him. 🙂
    Continuing to pray for all of you this week.

    Blessings

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