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?

girly pirate skull

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!


Patyrish said...

I agree 22 seizures is ALOT and they should be ashamed of themselves for leaving you and sweet Marie sitting all day wondering what to do.

We deal with constipation too and there are times I start to panic myself. Makily's condition is not degenerative so I can't imagine how nervous it must make you. You are NOT a hypochondriac. I have learned that there are many people that work in the doctors offices that totally should NOT be there. Makes me mad for you....and Marie.

**I tried to email you back but it keeps coming back with a "fatal error" and saying non-deliverable!?
You can link me...but only if I can link you too ;-)

Kiss Marie for me. I am praying that the increase in meds does not make her too terribly lethargic (we've been there and it sucks). Praying it helps the seizures.

Hang in there.

Milk Mama said...

I'm so sorry, Shan! I wish that I was close to you so I could give you a hug! I think you are right with the chronic constipation. It takes muscles to push the poo out. You are definitely not a hypochondriac. You are a mother who knows her child better than doctors ever could! You are all in my prayers!

Milk Mama said...

Where do you live? What state, anyway? Do you live near Lakeland, Florida by chance?

Milk Mama said...

Ignited Church is having a great healing revival right now. Hundreds of people have been healed and there is no end date at this point because of the healings and the people who are giving their hearts to Jesus. They are showing their revival online here is the web address
When I went to it, it took me to the main page, just search in the upper right hand corner for "Ignited" and click on the first video. I thought of you. My parents in law have been watching it for days.
Love, Sarah
I think I should blog about this now... I bet others would like to watch this or know about it. :)

Milk Mama said...

I absolutely agree! :D

Hey Colorado isn't too far from Oregon where we are! :D