I am going to be honest, today has been a rough day. We are tired. Poor Emma Kate probably has such a bad headache and she fusses every time she wakes up. She is eating well! Poor thing has been so hungry every time she's awake she wants to eat. Right before we left to go eat dinner, our nurse made a comment about the fluids coming from her chest tube. She said they looked a bit cloudy. This could be a sign of a condition called chylothorax. Basically, her lymphatic system may have been slightly damaged during surgery, which apparently is not uncommon. She may have a build up of fluid in her chest cavity. I think they will be treating her with a special type of formula that contains less fat. We don't know for sure that this is the problem, but we are very scared right now. PLEASE keep praying for Emma Kate! She is so precious to us!
My friend's daughter got chylothorax after the Glenn as well. Very common and you just have to avoid fats for a short time. The little girl (Lily) is now 4 yrs old, doing great and having her Fontan done next week in Boston.
ReplyDeleteDo not be scared. Remember to put faith in God because he's the one in the driver's seat.
Lots of love...
I know you guys are so scared and tired. I am praying for all of you! I love you.
ReplyDeleteStill praying!!! Its good to know how we can specifically be praying! Keep trusting God, He has brought you thus far, and I can't wait to see how else He uses precious Emma Kate.
ReplyDeleteHi Bethany -
ReplyDeleteOur son also had chylothorax after his PA banding in February of 2007. After several weeks of the yucky formula, he was fine! And he didn't have this issue again after the Glenn, so their lymph system does heal!
It is so hard to watch these kiddo's in pain and discomfort, but it helped us to remember that 30 years ago, they wouldn't have survived because they didn't have this surgical option. That helped when we felt so helpless. Take care and God bless you guys and little miss Emma Kate. She is so beautiful!
Jesse (Luke's mama - double inlet left ventricle)
http://smithfamilyjourney.blogspot.com