most frustrating day

Whew. Take a breath. We are finally home from the hospital. I did not strangle anyone. I didn't even yell. I raised my voice a little, but just loud enough to be taken seriously.

My mom has been fighting a fever for over a week. She goes to a clinic every day, but she doesn't see a physician every day, just once a week. Her physician's office is in a different building. I was already frustrated that no one was addressing her fever. One-oh-three and one-oh-four fevers are not something that should be taken lightly, especially in a person with no immune system. I was also frustrated because the nurses at the clinic were inconsistent in hand-washing and verifying name and date of birth (these kind of mistakes lead to things like RSV or drug errors). I expressed these concerns to the myeloma doctor. She didn't understand why the nurses at the clinic did not seek a physician's advice over Mom's situation. Then the myeloma doctor called an infectious disease specialist in the room to see Mom. I told him that someone had dropped the ball (those were my exact words) and I wanted to know why this hadn't been addressed. Apparently, he was the ball-dropper. He got all defensive. I told him there was no need to be defensive, I just want her issues to be addressed NOW. He said that if Dad and I couldn't take care of her, then she should be admitted. I told him that we were perfectly capable of taking care of her, but that I thought it was spectacular for her to be admitted so she could be observed by someone besides nurses. (I am NOT bashing nurses, nurses are great. I just feel in this situation a physician/s should have been involved.) He snapped at Dad when Dad told him that the antibiotics weren't helping. He called for her to be admitted, only to discover that there were no beds in the hospital. We waited about an hour while the nurses argued on the phone for a bed, no luck. He said we could go to the ER (gross, germs, STILL no bed) or back to the clinic. We went to the clinic and got more fluids. We also found out that the infectious disease doctor did not order the fluids and tests Mom needed. What a jerk. We finally got that straight, after I threatened to take her to UAB (oh yes, I did). Her myeloma doctor and the infectious disease doctor seemed to be clashing over course of treatment. We went and had a CT scan. No one can tell us if the RSV is causing the fever. She has no other symptoms, she tested positive on a culture. I understand that antibiotics don't help viral infections, and I understand that there isn't a test to diagnose the flu or a common cold, and I understand that her immune system is compromised so her body reacts differently than normal. I don't understand how someone can think it is no big deal for a person to be fighting a one-oh-four fever for over a week. Anyway, I am hoping that tomorrow is a better day. I don't think I have ever been so frustrated in my life. I also told myeloma doctor and jerky doctor that we came to UAMS because it is supposed to be the best, but I did not feel that we had received the best treatment. The standard of care received was poor, and it is unacceptable for it to continue. I also told a nurse that we pay the insurance company that pays the clinic and physicians, and they are providing a service to us.

I didn't yell today. I don't regret anything I said or did today. My mom is fighting for her life, and my dad is right beside her. I don't mind speaking up for them. If things don't improve in the next few days, I will jump up and down on someones desk if that's what I have to do to get some quality care. I am praying really hard that it doesn't come to that. I know that my God reigns, and He is in control. We will go home when it's time.