Update From Gracie RE: Libby

Not too much to report here. The sedation medication is working well and Libby has mostly been resting. When she does wake up, she is groggy but not wild and trying to get out of bed. She hates the nasal cannula that is giving her oxygen. When she is awake, she pulls at it constantly. We've had lots of hurt feelings cries today. She is sooooo thirsty and constantly asking for water. She is very limited in how much she can have, so we ration it out. They are actually backing off on the sedation to try and find the happy medium of more awake but not dangerous. A few things to pray for:
1.her incision site on her chest is oozing the same fluid that is draining from her chest tubes. This increases her chance of infection, poor wound healing, and then there is the question of why it is oozing in the first place. Please pray that this stops and there are no complications
2. the thing that keeps Fontan kids in the hospital is chest tube drainage. They can't take them out (and we can't leave) until the drainage stops. Please pray that Lib's will slow and stop soon.
3. there is some fluid around her left lung. Dr Fraser was unable to put a chest tube on that side because the lung is stuck to the chest wall. If a lot of fluid collects there, they will have to figure out a way to get it out.
4. that we can find a better means of comforting Lib without all these drugs. It would be nice if she could be awake more

Thanks as always for checking on us. Eric and I were discussing yesterday that this is really a process, not an event. In other words, while making it through the surgery was big and very important, the following days are just as important if not more so. There are so many potential complication, both in the immediate period and beyond. Not that we ever thought this surgery would cure her. From the very beginning when I was pregnant with Libby, Dr Fraser called these "palliative" surgeries. That was shocking to us because I think of palliative care as being end of life/keep them comfortable care. His point is that they can never fix Libby's heart, only try to make things better. SO - we continue on this journey, learning so much about ourselves, God, and others. Thanks for walking with us.

Love, Gracie