as you already know Rayden has hydrocephalus (fluid build up in his brain). the doctor came into talk to me last night while i was with Rayden and showed me the CT and MRI scans of his brain, his brain is filled with liquid and the doctor says they are doing what they can but they are scared they will not be able to get that brain tissue back cause it is so damaged cause of the fluid and he is pretty sure Rayden is going to have a bad outcome in life like he wont talk, walk, feed himself non of those things, it breaks my heart to think of him having to live a life like that. the doctors want me and Chris to sign a DNR (do not resesitate) they say his quality of life is going to be poor and i am really just stuck i do not know what to do or think right now it's so hard being alone not having Chris to talk to in a time like this i want to know how he feels about it cause i honestly have no idea what he is going to think on this! i do not want to loose my son i love hi with all my heart it is unbearable to think about loosing him not having him in my life but if he is not going to be able to move or do anything i cant imagine putting him threw that either, i am stuck i wish they could tell me 100% what his outcome is going to be, and its also hard cause i have researched and read so many stories similar and the kids are fine now when the doc told the the same thing. I am stuck i wish i had super powers right now so i could see the future for him!
Follow your heart Amy, he has made it this far! XOXO love you guys!
ReplyDeleteThis is the first time I have read your blog, and I wish I could share images of my daughters first MRI... she had no brain is what we were told when she was diagnosed; that was at the age of 2 1/2 months. Now she is almost 2 1/2 years old. She does indeed have a brain and it did come off the skull wall, and while she is speech delayed and we did have to go through many visits to all kinds of therapy she is thriving. Doctors cannot guarantee what will happen with this condition. They have to tell you the 'worst case scenario' as that is really all they know. I have a blog of our journey with hydrocephalus as well, (http://donnasdayasdaisy.blogspot.com/) In order to really find her journey, it starts in Feb. of 2011 and for the next year it was not easy at all. But it is something I would not trade seeing her now.
ReplyDeleteGood luck, and really you need to do what you know is best for you and your family in your heart. But if you do not feel you want to sign that form, then don't.
Donna
I am praying for you and chris. Rayden is a fighter and drs sometimes give you the worse case. listen to your heart talk to chris and ask god for guidance It is good to talk to other people like donna and who have had the same situation. It will be ok. I know it is a hard decision. Love will get your through.
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