May 24, 2013

UPDATE (5/24/13)Let’s begin this update with the news from Cardiology this morning. So, we arrived a little earlier this morning to make sure we caught Cardiology rounding on Beckett; as they approached the room we kinda felt like, “here we go.” They first addressed a few other issues other than the meeting from yesterday, so eventually they said, “So, the meeting from yesterday went well.” They proceeded to tell us that since Beckett seems to be handling the Milrinone wean as well as he is, they will just watch him over the weekend and then possibly get another echo on him early next week to see how he’s doing from that perspective. They mentioned that they will then possibly consider doing a Cardiac Cath within the next few weeks (or month) to better measure his heart function and pressures to see how he’s coming along with preparing himself for the next surgery. Since we will be here for at least another month (because of the Methadone wean), we will find out more throughout this next month as to when they truly think the second surgery will be. As you can tell, “the story” around here can change quickly…and that’s really not the doctors’ faults, but more-so that Beckett kinda runs the show and determines how fast and how well everything goes around here (we are all constantly learning that lesson). So, I tried to corner the Cardiologist with an attempt to give us an estimated date/timeframe for his next surgery, and even though they don’t typically like to make those kind of guesses or assumptions, they said that they think this surgery will most likely still be this summer, or early fall at the latest.

Also, his VapoTherm settings have come way down. He got weaned today and is on a flow of 3 and oxygen support of 24%…and he’s been doing great with it!

So, throughout the next few weeks, Beckett will be closely monitored from a Cardiac standpoint (like always), working on his Methadone wean, get him down and eventually off of VapoTherm (his oxygen support), exchange his IV meds to Oral (like, Lasix), and possibly do an MRV to see the status of his blood clots (specifically the one his in brain from when he went into Cardiac Arrest hours after his initial surgery back in January). That’s it. Easy, right? No, but seriously, Beckett has made some huge strides these past few weeks, and we are very VERY thankful!

Lastly, we had a lot of great visitors today. My morning began with a phone call from my Uncle that he and my Grandma were on there way from Ohio and should be here by noon. So, that was exciting. My Grandma and Uncle have yet to see Beckett, so it was really great for that to finally happen. And as they were leaving, some of Beckett’s primary nurses from St. V’s visited again. It’s always so good to see them too as they truly care so much for my son and it really means a lot to both Leah and I. Then lastly, Leah’s mother surprised us again and just showed up towards the end of the day. It’s always nice to have her here (along with any of our parents), but Leah does appreciate turning around and being pleasantly surprised to see her Mom here.

Anyways, we truly have such an amazing support system. Our family, our extended family, our friends, those of you we’ve never met, and especially you who is reading this post right now. Thank you. Thank you. There are days that we just get so worn out from this, but your constant support and encouragement is amazing! We try to read each comment, observe all the Facebook “likes”, and we are flattered and amazed! So again, thank you!

And as always, thank you Jesus…our Savior, my son’s healer, for bringing us this far, and carrying us through. You will forever be who this family will praise; may the Rupp family glorify and honor your name now and for many generations to come.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

2 thoughts on “May 24, 2013

  1. Sharon Crigger-Stokan says:

    Such an encouraging post, yet with much to continue to pray about. So nice to have friends and family visit – it just does something inside of you in a way that little else can to encourage and lift up your spirit. Keep looking UP and keep hanging in there and we’ll keep praying. Go Beckett and Go God – we are praising you for the work you are doing in this family’s life. Thank you, Lord!

  2. Amen. Lots of love to you and your family always! ❤ the Taratuta's

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