Well, we had a pretty rough day. Emily has some how got herself on a 3rd shift schedule and doesn't go to sleep until around 4 or 5am. I don't think right now is the best time to try and keep her awake during the day because she will cry and I really don't want to her to have a seizure. Once we get things more under control I will try. Maybe she will just change it herself. Its hard but I do get to nap a couple hours at a time during the day.
Last night she decided she was not going to sleep at all. I am too afraid to sleep while she is still awake because of her seizures. About 6am she started this rhythmic jerking of her feet and hands. Her fists have been clinched since she started ACTH but I was noticing her squeezing them over and over, almost every second. Shortly after that she started pulling her toes up in the same pattern. Then I felt her whole body tensing up in the same pattern. I just assumed it was a seizure and gave her the valium. Valium scares me so much because it hits her so hard and until she is asleep she gurgles and makes all of these weird noises and I am so afraid she will aspirate. She has such low muscle tone as it is (another side effect of ACTH) So needless to say I still hadn't gone to sleep.
I wanted to call the neurologist so I waited until 8am when they open and conveniently they still had not switched the phones back from Monday when they were closed. I had to keep calling and pushing buttons until I could get a human and she said the nurse practitioner will call you back in 20 min. An hour later I called them back and they gave me a million and one excuses why I couldn't talk to someone then proceeded to tell me they were tripled booked so I could not even bring Emily in the office!
Let me stop for a second and explain what else was going on. Last night the furnace went out so we were using space heaters and I have a horrible kidney stone that I think is too big to pass and I can't take pain meds because that would make me too out of it to take care of Emily. If you have ever had a kidney stone you know how bad it hurts. I am pretty sure if we had a dog it would have ran away also. :)
A nurse practitioner finally called and agreed that she did think she had a seizure and she upped her topamax dose.
We are still waiting to be referred to Cincinnati Children's hospital for a 2nd opinion.
So at what point is it ok for me to shave my head and hit cars with an umbrella? Famous people get to be admitted to the hospital with "exhaustion" all the time. What criteria do I have to meet? Just kidding!!! Really! I have not lost my mind (completely) yet.
Emily is worth every hour of lost sleep and I will fight tooth and nail for her to have THE BEST care around.
I realized tonight that we are so blessed, even with the bad things. My furnace is broke BUT I have a house to live in. I am in pain from kidney stones BUT I am alive to feel it. I am so sleep deprived BUT its because I have a daughter that I never thought I would have. We have way more than we deserve and I am thankful for all of it!