Today has been a rough day for Anna Grace. Dr. Bradley put the chest tube back in today to drain the fluid off her right lung. So, as I sit by her bedside the chest tube machine is gurgling & the monitors are beeping their steady rhythm. Anna Grace is sleeping the sleep of a little baby who has had morphine, oxycodone & versaid.
Dr. Bradley thinks that the fluid build up might be "Klye" (sp???) fluid caused from a condition called "Kylothorax" (sp????) which is caused from her not being able to process the fat in breastmilk or formula. They have stopped all her feeds for now & she is on only IV fluids. So, we have had a setback today.
I haven't been able to talk with Dr Bradley about it as he is currently in the OR. Hopefully I'll be able to speak with him this evening and find out his take on the fluid and the game plan from here. If it is "Kylothorax" then she will have to be put on a "fat free" diet and special formula - no more breastmilk.
She also had her swallow study this morning which was inconclusive. They want to repeat it in a week. So, we still don't know if she'll be able to eat from a bottle, we don't know if she'll be able to continue with breatmilk and we don't know what the fluid surrounding her lungs is caused from.
Certainly still a lot to be in prayer about. I'm sad that my little one has had such a rough day and really trying to rest in the Lord's soverignity - if HE is allowing this then HE has a reason and I need to TRUST HIM. Faith.........
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3 comments:
Praying for you! Hang in there...and let us know if there is anything we can do for you. What hospital are you at again? Good to know you...Annamarie (mom to CHD baby Eve and working on 1in100.org!)
My daughter had a chyle issue as well, back in June (27th it was discovered). I wrote a little about it in my blog, but we had lots of other issues going on at that time as well. The doctors said (and our own research) the chyle is most often and most likely caused by the surgeon nicking her thorasic duct during surgery. The duct is so small on babies that they can't even find it usually. It usually heals on its own once the baby is on a special formula with pre-digested fats for several weeks. Hang in there! Prayers are with you!
Tina--
We are praying!! I am so sorry today has been hard. I am praying God's PEACE to surround you!!! He is on HIS THRONE--- and His love NEVER fails.
Isaiah 19:22b “…he will strike them and heal them. They will turn to the LORD, and he will respond to their pleas and heal them.”
He will hear and answer our prayers!
I love, love, love you, my friend!!!
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