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.
Becky, sahm to 25/04/2000 Chloe 12/04/2002 Cameron 19/02/2004 Caitlin 28/06/2005 24/07/2006 and Caden 14/03/2008
19.05.2012 18.08.2012 24.05.2013 25.6.2013 04.09.2014
Thinking of you all, mistymama, and sending you and baby Gavin peace and love. xo
Part hippie-chick, part type-A career woman, all mama. Enjoying life as a wife to my partner of 11 years, and a mama to our smarty-pants toddler, Cadence.
how terribly heartbreaking. i'm so sorry this is happening. i shared your story of sweet gavin w/ my husband many weeks ago and we think of him, and your family, often.
Beth- WOHM -Madly in love with my Wife- SAHMandSophia, born 11/2/10, at home! Expressing love, one ounce at a time!
My heart breaks for Mistymama and her entire family. I have been thinking about her a lot the past few days and just haven't known what to say.
I'm thinking of you, Mistymama.
oh my, i'm praying so hard for a christmas miracle for them and clutching my baby just that little bit closer. always thankful.
love to you misty and strength n comfort to baby x
oh no. i cant say anything. too many tears. poor mama poor sweet boy
tears here too. how heartbreaking.
thinking of you Candace and family and your sweet baby Gavin. May he rest gently in peace
Mama to DD Feb '08 (9lbs), DS Oct '10 (10lbs) , DD Jan '13
So much tragedy lately... rest in sweet peace, baby Gavin. And strength and comfort be to those who knew and loved him.