But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Thursday, October 11, 2012

Seth struggling more today

Hi faithful friends, family, prayer warriors and caring "strangers,"

Seth has had a rough night and morning. He keeps de-satting (referring to his blood oxygen saturation) way down into the 50s, 40s and even 30 percent range, whereas before he was holding steady in the high 90s. He's down to only 5 ppm on the nitric, having started at 20 ppm before the weaning began, and it was around 6 ppm that he started struggling. The nurse practitioner and neonatologist have assessed him and are checking into getting another echocardiogram possibly to check on his heart. They're also going to consult with pulmonology to see if it would be wise to start another vasodilator drug that can "take over" for the nitric and allow them to get him off. They don't know why he's having these deep de-sats, beyond the fact that it may be the surfactant gene mutation, of course. (Those with experience with ABCA3, please feel free to comment!)

He's also more agitated today; the nurses have orders to give him more meds as needed to help with that. Thank you so much for praying.

Love,
Carrie

11 comments:

  1. No experience with that....but a faithful "Seth Fan"....Storming the Heavens with tears and Prayers.......From Dayton Ohio

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  2. Holy Father, Creator of the Universe, You hold little Seth's very being in Your Hands. Please, we pray, heal his lungs. We are asking for a miracle for Seth eiither directly from You, or through the doctors and others caring for him. He is your precious child, dear Lord, a gift from You; please let his time on earth continue and let it be healthy so that he can proclaim Your mercy and grace and be a blessing to his family. We praise You, Lord, for all the mercies and blessings You have shown the Jones family, and thank you for hearing our pleas on Seth's behalf. Amen. NKL

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  3. If worse came to worse, would Seth be able to receive a lung transplant? I know that other infants have received lung transplants that have the same issue as Seth. Praying for you all.

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  4. Sweet little boy...you are being prayed for!! I'm also holding the rest of you Jones' up, of course!!

    Angie (friend of Amy Long)

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  5. Sweet little boy...you are being prayed for!! I'm also holding the rest of you Jones' up, of course!!

    Angie (friend of Amy Long)

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  6. Putting you and your precious Seth at the feet of Jesus over and over again!
    NLJ

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  7. Praying for Seth and the rest here is link that be helpful http://globalgenes.org/patient-stories-of-hope-and-inspiration-8/

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  8. Still praying.....May God's hand rest on him tonight and let him get a good nights rest without struggle....

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  9. The Lord God is a sun and shield, He gives grace and glory. No good thing does He with hold to those who walks urightly!Ps. 84:11

    Keeping your precious Seth and you in prayer. Sorry we cannot attend the shower at Faith ...out of town.

    Gail and Dan Harlin

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  10. Constantly praying for Seth, for all the babies, and for strength for your hearts. With love from Ontario, Alicia

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  11. Praying for you all! A pulmonologist I heard speak recently recommended http://www.child-foundation.com/ for families with surfactant deficiencies. Not sure if you've seen this or not.

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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