Bumpy road

Evynn has had a bumpy few days. Chest is still open with retractor. Still on ventilator. Still on ini-tropes and vasopressin, which had been weaned but needed it back after her blood pressure dropped. It has been a tricky push/pull trying to reduce the fluid in her tissue without drying her inside out so much that her pressure suffers. They say her main issue is being vasoplegic (weak/large veins). Yesterday morning she was in a better position and they were going to trying close her chest today but now they are thinking they won't be able to close for at least 5 more days.  She is completely off the muscle relaxer and has been complaining of pain. Her morphine has been increase and they have added other meds to help make her feel comfortable. She has been awake a lot and mouthing the words. Even mouthed 'I can't talk' when we were asking her where she felt pain. Hoping with the increase in comfort meds she will get the proper rest she needs. Over being a 'failing FONTAN' going in, they are happy with where she is now.  It's going to be a long slow road for her.