The bullshit about an Advanced Directive..wanting me to change her to a "no code"/do not recusscitate. I am so freaking tired of them hammering me with this. The last time this happened the doctor ended up yelling at me in front of Sara and she ended up coding and all the issues we've had to deal with for the last 6 days.
They are talking about 'quality of life' and 'prognosis', etc. They aren't even seeing that they are asking me to basically kill my thinking, breathing, communicating daughter. I have asked her, and she has said that she wants to keep fighting. She wants a chance. I've told her the different prognosis' and told her how hard any recovery is going to be, its going to be a long road. She knows.
This kind of pressure from headstrong doctors wears me down more than the prospect of her not progressing past this point. They just don't know her. They just don't know what she wants. And in the absence of written instructions about THIS SPECIFIC CIRCUMSTANCE (Locked In Syndrome) they are just going to have to trust that I am doing what Sara wants and leave that question, and me, alone.
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These doctors may know medicine, but they obviously don't know the human spirit. Sara's is very strong -- you stick to your guns, Kristina. You are doing the right thing.
ReplyDeleteCarol McCabe
Kristina - I guess these Dr.'s have never met the Baker women before! You and Sara are two of the strongest women I know. You keep fighting for what Sara wants. When or if that changes, you will know. In the meantime, do what you know is the right thing to do and that is stand by Sara. We are all fighting with you. Marsha B.
ReplyDeleteThere is a bond between mother and child that doctors don't always credit us with having. If it doesn't feel right to let go, then its *not*.
ReplyDeletePersonally. I agree with you anyway. She just moved recently, something is happening there. Considering all the options and your daughter's wishes, you are acting in her best interests, which is your job. Just tell them you are aware of the options and your decision stands. It is your choice after all. Sometimes its like dealing with a stubborn year old You have to broken record them :)
Hang in there! It will get better I'm certain of it. ~Just another Mom
Kristina,
ReplyDeleteRemember your grandfather. In the face of trouble, he would stand there, arms folded in calm defiance, determined, responding in calculated, well thought out statements and standing his ground. Whatever their motivation, unselfish or self serving, you are in charge and more importantly, you are in CONTROL. Calmly, but determined, exert your control and protect your baby. You lose your cool, they win. You don't, you win (and thus, so does Sara)
Uncle Sim
You tell 'em, sister. I've known Sara for the last 5+ years, and if there's one thing that girl is, it's a fighter. Don't let them get you down.
ReplyDeleteI'm sorry that those doctors keep assuming that they know everything there is to know about Sara! I'm glad that there are still some logical people out there. :]
ReplyDeleteMy Granddaughter, Elizabeth Conley, forwarded me info on Sara for our prayer teams here in Jacksonville, Florida. Do as God leads you to do and stand firm for Sara's wishes. You now have several hundred more people of faith praying for her recovery here in Florida and soon in Maryland too. God loves you and Sara and is walking with you. Katey S.
ReplyDeleteIs it illegal to pick up a doctor and carry him out of the room? because if not, I'll totally do that.
ReplyDeleteYou could always give the doctor the option to ask sara themselves if she wants to keep fighting. Although i doubt sara would really want to talk to a doctor like that.
ReplyDeletehttp://locked-in-syndrome.com/_wsn/page5.html.
ReplyDeleteKristina,
Just to let you know who I am, my name is Debbie and I'm Daniel's aunt, Nanci's sister. I'm sure you've been searching the internet for answers since this whole ordeal began. I found this website that I think would be most encouraging for you to look at!!
You have many people of faith praying for Sara and you here in Southern California and also in Northern California as my sister Sandi in Petalum and her church's prayer chain are also praying. Don't put all your trust in doctors. You must follow your instincts as a mom who knows your child. I will pray for strength for you. Debbie
Dearest Sara, many years have gone by since you have been in the 6th grade. You had a strong will then and I am sure that will is within you now , just resting. Have your mom read this to you and remember the great times you had in the 6th grade. Hugs to you...keep fighting for that recovery...Mrs Z
ReplyDeleteKeep your Faith strong Kristina. I know exactly how it feels about advanced directives, I have been taking care of my mother for the past 6 years and she is under hospice care at home program of Kaiser. Medical Doctors seem to loose their human and spiritual emotions and became so callous. But you are doing the right thing. Give her the chance to fight a good fight but keep your faith along with it. Let love and faith dictates you throughout this journey. God is watching from a distance.
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