I have a very sad update from MistyMama about baby Gavin: Gavin is not doing well. We decided we do not want him to suffer simply to extend his life & put a 'do not resuscitate' in place along with measures to make him more comfortable. If things improve, we choose to bring him home, with hospice. There are no words to describe this nightmare & the agony of watching Gavin suffer. Please keep her and her family in your thoughts and prayers, this a position no family should ever have to be in.
Update 12/17 (c&p from FB): They have identified where he is loosing protein and can give a certain steriod to help stop it - that also means we can stop the nasty ACTH injections. Our goal is keeping Gavin comfortable and give him the best quality of life possible, w...hile not extending his life with heroic measures. He has comfort meds (for pain & rest) avaliable and we will continue work on his seizures - he's starting a ketogenic diet Monday. But most of all, we will be able to care for him AT HOME where he belongs, with very supportive nursing care. Hopefully he can come home in time for Christmas. Also forgot to mention some genetic tests came back - Gavin's lissencephaly is genetically based, some deleted chromosome. We'll meet with Dr's next week for more detail and hopefully be able to put a name/syndrome to this.
Edited by chely7425 - 12/17/10 at 8:11am