I have people from all over the world contacting me saying their children have the same reactions, the same situations. All of them have been diagnosed with different diseases, and I am at my whit's end.
You know I worked for +La Tour Restaurant for over 10 years and when I asked them to put her blog up on their facebook page, hoping all those people that I served via the office and reservation for so long, one of them might have an answer, they said it wasn't business related and told me they wouldn't help.
On Thursday +Rocky Mountain Hospital for Children a new doctor walked in, pulled the oxygen from my child's face and screamed that she needed a psychiatrist, they released us as medically okay, even though she was having up to 7 attacks a day and couldn't eat anything without her throat swelling, at one point they even refused to treat her throat swell with benedryl. Within' 3 hours she was in ICU. Why? Why us? Why is no one helping us? She can't live like this, even her good days are worse than anything I've ever seen. The doctors at Denver Health asked why in the world Rocky Mountain didn't add a pick line, they can't even find a vein for an IV anymore.
I lost it at the hospital, with that doctor, and Greg has been trying to keep me away, with just a three hour visit each day, as I have been with her every night since this nightmare began. I'm not very good in the hospital. If you know me, you know that unless I'm doing computer work, I don't often sit down. The hospital drives me insane, but so does not being with my child when she is in pain. I cry more out of the hospital. Things are getting more serious every day, and I don't know what to do to save my child.
From Solstice feeling anxious
"Im literally allergic to life. Im allergic to the hormones my body makes, I cant eat or drink without attacking, they cant put a feeding tube in because they need that space for intubation (breathing tube) so, I get to get nutrition through my iv and pick lines. Maybe for a couple days, maybe forever. Could you imagine never eating again? Its honestly come to either that, or death. 2 days ago a different hospital overdosed me with epinephrine. It was the most painful thing I have ever experienced and it made the breathing situation worse. The people at Denver Health are incredible. Finally trying to help and trying new things. Now if youll excuse me, need to go get poked and prodded by a bunch of scary nurses and doctors."
I don't know what to do anymore, I can't imagine living without my child, and I can barely remember the child that sang from the moment she woke up until the moment she went to sleep. The child that flew down ski mountains, and laughed as loud as she screamed. She is mentally, physically, and emotionally wrought, we all are. Now she can barley walk, and never sings.
I am getting angry, very very angry. At people I believed to be my friends that never call, at the Ferzacca's for refusing to help, at the doctors, who when unable to explain the illness claim it's in her head. I need to punch something, yet I know that won't help. It seems as though nothing will. So, here I sit, crying, hoping that someone will figure it out.
Amanda
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