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
This is the blog for Gavin and Carrie Jones and family. We live in Papua New Guinea and are working to see lives transformed by the living Word of God through Bible translation. Gavin is a helicopter pilot. Carrie, who has her degree in Public Health, works in the lab at our busy rural clinic. Our son, Isaac, was born in 2004 and our quintuplets, Will, David, Marcie, Seth, and Grace, were born in 2012.
Let love and faithfulness never leave you; bind them around your neck, write them on the tablet of your heart. The you will win favor and a good name in the sight of God and man. Trust in the Lord with all you heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight. -Proverbs 3:3-6
Thursday, October 11, 2012
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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones
Blog Archive
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2012
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October
(34)
- More on Seth
- Specifically about Seth
- Happy days!
- Pictures of the boys
- Quick update before bed
- Extubated!
- Ultra-quick!
- PRAISE! And PRAY, please!
- And then there were 4!
- Steroids needed
- Whew! What a relief!
- SOS for Seth
- Super quick update and prayer requests, praises
- Slide show of the Quints; news
- Critical period
- Homecoming delayed
- Pictures Thursday Oct 11th
- Seth struggling more today
- Brochopulmonary dysplasia (BPD)
- Oooops Again. And a baby's coming home?!
- back up on vent settings :(
- oops
- joyful days
- Two months old!
- Volunteer and gifts Q&A
- THANK YOU!
- Saturday night Oct 6
- Two more pix of Gracie
- Volunteers needed!
- Update/Pictures Friday Oct 5th
- Seth: surfactant deficiency mutation
- Not much news, but our babies are cute!
- Prayer time for Seth today
- pulmonary hypertension, PDA, infection and eye exams
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October
(34)
No experience with that....but a faithful "Seth Fan"....Storming the Heavens with tears and Prayers.......From Dayton Ohio
ReplyDeleteHoly 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
ReplyDeleteIf 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.
ReplyDeleteSweet little boy...you are being prayed for!! I'm also holding the rest of you Jones' up, of course!!
ReplyDeleteAngie (friend of Amy Long)
Sweet little boy...you are being prayed for!! I'm also holding the rest of you Jones' up, of course!!
ReplyDeleteAngie (friend of Amy Long)
Putting you and your precious Seth at the feet of Jesus over and over again!
ReplyDeleteNLJ
Praying for Seth and the rest here is link that be helpful http://globalgenes.org/patient-stories-of-hope-and-inspiration-8/
ReplyDeleteStill praying.....May God's hand rest on him tonight and let him get a good nights rest without struggle....
ReplyDeleteThe 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
ReplyDeleteKeeping your precious Seth and you in prayer. Sorry we cannot attend the shower at Faith ...out of town.
Gail and Dan Harlin
Constantly praying for Seth, for all the babies, and for strength for your hearts. With love from Ontario, Alicia
ReplyDeletePraying 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.
ReplyDelete