Her edema has worsened and her urine output has decreased. Dr says her capillaries are leaking fluid into her tissues. They are giving her meds to help with this. They are paying special attention to her kidneys and liver, so far OK. Her labs are coming back neg for infection but DR have her on 3 bacterial antibiotics and 1 fungal antibiotic. Please keep her in your thoughts as we go through this latest hell.
Update:
Dr are saying the edema may be linked to her adrenal glands not producing sufficient amounts of cortisol?? Who knows, they are taking a stab with this and going to put her on a 3 day course of hyrocortizone to see if that helps. Something needs to work soon, she gained 3 oz of fluid just last night. If not they are calling in for an Endocrinologist consult from CHOP or St Chris's.
All we know now is that her respiratory system is stable, she's comfortable.
Dr told a urine sample today to see if there's an infection there.
Tomorrow they may begin her feeds.
Dad held Liv for 2 hours tonight. She loved her "Daddy time".
10 comments:
My thoughts are with you and little Livia- she's a fighter and she'll get through this. Love Heather
Jason and Judith,
You and your girls have gone through so much and you keep fighting strong. Your family is an inspiration and my family's thoughts and prayers are with you everyday. I look forward to the day that you can get off the rollercoaster and bring the girls home!
-Luke Harris and family
Thoughts and prayers to you and Livia to get over this hump. Love, Karen & Frank
Judith,
Jaxon had the same thing happen with edema a week ago. As a last ditch effort they started steroids. He went from peeing 4 ccs one day to 500+ the next. He lost almost a pound in pee. He had been so swollen he couldn't even open his eyes. She will continue to be in my thoughts...
Rachel
www.babysites.com/sites/mcconathy1
We're glad they've figured out why she's swelling... our prayers are always with your family. Come on Livia, you can do it!!!
Hi, Judith and Jason.
Emily, Sarah, and I sent God a special prayer for both of you and your daughters tonight. We think about you often and send you our love.
Hugs and kisses to Nina and Livia!
Bekki
I am sorry to read this...I am praying for her to get over yet another hurdle in her short little life that she has lived so far!!
That will do the trick...that is the same steroid Jaxon is getting. His corti(??) was low also. He also gained 2-3 oz a day for a couple days, but once he got that hydracortizon (sp) he was back to himself. Tell the nurses to watch out for lots of pee....
I check your site several times a day. Your daughters are absolutely beautiful....
Rachel
Hey Fox Family,
We are praying for Livia, Nina and you everyday. We've said the prayer so often that Owen has it memorized and can say it all by himself. Stay strong. The pictures really are beautiful.
LOVE and PRAYERS,
Kristin, Chris and Owen
Poor babe. I hope the steroids help with Livia's swelling. We're thinking of you and sending deswelling thoughts your way.
Love,
Betsy, Bruce, Lily and Alice
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