For me I am kind of a follower. I don't like making waves. Most times. I like to hold hands and sing and think that everyone should just nap and eat cookies. Then the world would be a happier place. Really.
So when you stand up for something in a world that tells you to go right when you know left is really the proper route it is hard. That is the world that I dwell in daily. It is a world I have chosen, but still at times I wish it would go away.
This last week I have lived at the hospital. Cary Lynn went in on Saturday afternoon after getting really sick from her MRI. While they were running tests they found her sodium levels were abnormal. For her a healthy range is 131-145. Hers were almost in the 160s. Yikes.
So that is when things started going down hill for us. Their first inclination was to put Cary on a high sodium drip. Which brought her levels up more. Sigh. It was kind of one misstep right after another. From nurses having a huge fight in the hallway, to improper care of Cary's pick line, to putting her on the wrong IV fluids. It wore me out. It seems like I spent more time babysitting and micromanaging than I ever had to before. It was frustrating and irritating.
What was decided by endocrine was that due to Cary having to "fast" before the MRI is a bad idea. Her sodium levels can't handle it. She needs to be admitted and have an IV before any procedure. Preferably a low sodium one.
So that was good. It was also amazing that once she was off of the IV that her levels were totally normalized in an hour. Surprise surprise.
But the big thing that kept rearing its head up was the g-tube. It felt like I was being bullied and pushed. It was even insinuated that I would not be allowed to leave unless I agreed to look into the procedure.
Don't get wrong, we have been talking about it. And I did want more information. So I talked to the doctor. But he was confused. He saw Cary, saw her eat, asked questions and then asked more questions. He was a little confused as to why we wanted a tube. When I explained that we were gathering information and told him about her he thought that we were being sensible. Which I strive to be on occasion.
But here are the problems. Cary is medically fragile. A simple MRI landed us in the hospital for a week. Any surgery or procedure is even more risky with her. Plus she is able to eat and drink orally and tests have been run proving she doesn't have any problems. And our GI doctor is a problem as well. When I told the Dr. about insisting on putting her on a different medication and that the GI didn't like that one of the nurses in the room told me that he just "gets even" with his patients. This does not instill great faith in me.
I have good instincts. I have always had them. I sense things that people don't always pick up on. One of my friends always jokingly says that my "bat senses" are top notch. It is easy to be around all these very intelligent people and think that they are a fount of knowledge and know more than you will ever hope to know in your lifetime.
But sometimes you have to step back. You have to follow that instinct. You stand alone. And they look at you like you are the nut as you say no, not now. I think there is a problem, but we are missing it. Plus there are 3 tests they are supposed to run that no one has. So after getting a new GI doctor we will run the tests. I will have my answers. If she needs the tube she will get one. But my "bat senses" are in overdrive and not once I have I regretted listening to them.
Cary eats, she drinks, and now that we are out of the hospital she is sleeping again:). It is hard to stand alone, but that is the only way we can change things is to make a stand. To declare that the system isn't always right and they don't always have your best interest at heart. So I will stand. I will follow my instinct and my inner voice to do what is right for my children. Always and forever.