Wednesday, April 16, 2008
I'm mad. Mad that my calls are not important enough to be returned. Mad that I get the feeling that sometimes, if you are outpatient, you are not considered to have as much medical necessity as inpatient. I'm mad that I made phone calls to doctors today about two relatively time sensitive issues and neither one saw fit to call me back.
Marie is dealing with chronic constipation. In the last two weeks she's managed to "go" six times. I'm worried that the issue is perhaps more serious than I had believed before, because, she's on Milk of Magnesia twice a day and still doesn't go. I'm scared that her bowels might be stopping working. It sounds like I'm a hypochondriac but I'm not. I don't believe that I am anyway... I have a child with a degenerative disease, I freak out about things. It's allowed.
Also, Marie has had 22 seizures today. Those are the major ones that we notice anyway. Our family doctor thinks she may be having more than I realize because she does this thing where her eyes go two different directions and he thinks that simple act could be a seizure unto itself. She is TIRED! She is pale, she makes moaning noises during her "episodes". She is non-verbal, she doesn't normally make any noise at all, but she moans during seizures. I feel her, I think they hurt. I am ticked that I feel like doctors do not listen to me. She's had her emergency extra dose of Clonazepam and they've slowed down, but come on! 22 is a lot!
I feel anxious because I feel like there's something more I should be doing to call attention to her issues that I'm not aware of. What? I think of things over and over again, what I could do differently but I'm stumped. I just hate that things are happening to her and I cannot stop them.
Ugh, just talked with the on call Neurologist... apparently the nurse at the clinic was supposed to call and never did. I will have her neck.... Marie is taking higher doses of all her drugs. This means in an effort to control her seizures she will be my little zombie for the next few days. Some days we cannot win for loosing. To top it off I called our hospital to leave a message for our family doctor so that he is aware Marie's meds have changed. The nurse I talked to there was rude to me. Don't these people know not to mess with Mommy?
On a lighter note, Matt, you make me smile. When I am excited about techie things I will make sure I use proper terminology in the future, it just makes it cooler:) Thanks for the heads up!