April 24, 2013

UPDATE (4/24/13)

Praise the Lord for hope. Praise the Lord for renewed hope. Today’s care conference went much better than the last. I was nervous all day for what I might hear, but was pleasantly surprised by how positive the meeting was. While they cannot guarantee things will happen how we want them to, they do believe, as do I, that Beckett will be just fine. The main thing is for him to be able to come off the Milrinone drip, which they are planning to attempt tomorrow. After the events of last Friday, they have weaned him slower this time and amped up the oral medication that will be replacing it. They believe this should do just the trick. Other main points from the meeting include: they do think he could still be a candidate for the next stage of surgery, there are still more options before we would need to put him on the transplant list, he needs to get bigger (so they increased his calories today), overall he is currently pretty stable and they think he is looking really good, and finally, if everything were to go smoothly, we could possibly go home in a few weeks. While we have decided not to hold our breath for that, nor are we telling Beckett they even said it, it is still nice to hear we are currently heading in that direction. There are still things we need to accomplish such as getting off the oxygen, weaning off the Fentanyl and then the Methadone, switching his meds from IV to oral, etc. But, at the current moment, things are looking good.

It truly seems as though Beckett is feeling better because he has been awake and playing so much more the past few days. He was even so happy today when my mom was playing with him the nurse said it sounds like he is laughing, which it definitely did. It was the cutest thing. They also keep saying how amazing it is that for being as sick as he has been, he still is developmentally right on track. That is so encouraging to hear, especially after they expected him to have some degree of deficit following his arrest right after the initial surgery. God is working miracles in this boy’s life.

So today was a wonderful day. They made very minimal changes in order to give him a day of rest before the Milrinone wean tomorrow. We continue to pray this time is a success and Beckett’s heart can withstand the work with only oral medication. I truly believe God will give him strength, and I am watching and waiting for healing. As the next few days will be very critical, we ask specifically for prayer that Beckett can successfully wean off the Milrinone. We can deal with everything else later. We rest in the trust that God will give Beckett exactly what he needs each day, and one day at time.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

4 thoughts on “April 24, 2013

  1. Child of God says:

    Yea!! Praise God!!
    Praying this wean goes smoothly.
    Precious Father, glorious KING. Have Your hand on Beckett as he goes through this wean. In the name of Jesus. Amen.

    Praying and praying

  2. Child of God says:

    Lol! I just realized that rhymed. ;P

  3. Linda Rupp says:

    Psalms 73:26b
    “God is the strength of my (Beckett’s)
    heart ❤”
    Praising God for renewed hope and
    encouragement!
    Love you precious baby Beckett!
    Grandma Linda 🙏

  4. Just so happy to read this encouraging post. Prayed all day for you and your conference. It is good to again read the encouraged tone in you note. Be assured of continued prayers…fervent prayers of petition on Beckett’s behalf as he is weaned from this medicine. A verse that has meant a lot to me over the years is “Psalm 39:7 – But now Lord, what do I look for? My Hope is in you. ” Go Beckett…and thank you Lord for this hopeful and encouraging conference that Beckett and his parents had today!

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