Friday, May 21, 2010

News about Amber and Me.

Amber had her ph probe done and the result turned out normal. I was devastated. I was hoping this would prove whatever was wrong with her. Apparently she does not have alot of acid in her vomit. So now he thinks she may have non-acid reflux and there is a test, similar to the ph probe, but unfortunately our hospitals don't perform this test. When he called me he said to me "I don't know what's wrong with your daughter, take her to children's"... Another devastating thing for me to hear. For him to just give up, because it's not an easy case!? So now i have to play with the insurance company to pay for me to go outside the network, because the St. John's doctor is referring it! Otherwise I will have one massive bill, I am sure. I know I will get them to, but if not I will pay if it will give me results!!

I cried the full day at work, so frustrated with it all. So lost, not knowing what to do now, so powerless. I have never felt so out of control, all I can do is take it one day at a time and hope that they find a cure! I find myself withdrawing into myself, not really wanting to talk about anything, forcing myself to get thru a day, i do it because i know i have to, but don't want to!! I know it's depression and it sucks!!! I force myself not to overeat, but believe me I could eat and eat and never get full. This is a true test!!

Here's a couple of pics with the ph probe test thing.
The little box had buttons that you had to push, one was for when she felt like she had to vomit or if she vomited. One button was for when ever she ate or drank and then another button to tell it when she was laying down or sitting up.
We decided to make the best out of a bad situation and color the tape. I tried to cheer her up :)

About the only good news that i have to share is that my doctor called me and was so surprised on my blood work...Everything was good. My A1C came down from a 10 to a 6 which is exactly where he wants me...and the one shocking news was that my cholesterol is down to 152 I have never had it under 200 before!!
My doctor said that if the report did not have my name on it, he would think it was another person...He told me whatever your doing keep it up and maybe we can get you off some of these meds!!! woohoo!!!
My husband also got a phone call from the doctor, he warned Frank that if he did not start watching his sugar that he will be put on pills!!! WHAT A SWITCH!!!!


momma/mary said...

it seems to be one battle after another for
Amber. You just have to keep trying to help her. I know you will. Good news for you on your results!

Michelle said...

Good luck with everything with Amber. I'm sure it'll be figured out soon!

And congrats on the blood results!

River Glorious said...

Caro, did the doctor do a endoscopy on your daughter?

I understand how you feel, it's like you are describing how I felt when I was told that AJ had to have a heart procedure, the risks, the unknowns, all that worrying you do over money, you're describing me! Yeeks! I'm so sorry you are going through this, I know it's hard for you.

You will get through this. There has GOT to be help out there. Once you recover from the initial shock, start making phone calls, get a second opinion, ask around, keep on searching on the net for symptoms similiar to your daughter's, etc.

Becoming more informed will help take away the fears, sweetie, and count on our prayers for you and Amber.

Karmyn R said...

OH Caroline. How frustrating for you. I can't imagine. I am praying that the insurance company pays for whatever tests necessary to help Amber!

(and great news for you about the cholesterol. YEAH!)

troutbirder said...

That really great news on your tests. I fight Type II, fatty blood and acid reflux. Yuk. My scores are never that good. Oh well. Money issues aside, I think it's rare to for doctor to admit he doesn't have a clue. Give him credit for being honest. When my doctor did that he sent me to the emergency room at Mayo Clinic where they saved my life.

LiLu said...

You are such a good mama. Hope everything works out and she's ok soon! And congrats to YOU! :-)