Normal day

Ellie has acted really normal all day. She has been smiley and awake.

Neurology came by. I really liked her except for the fact that she kept telling me over and over how Ellie could die any time, she was really fragile, her brain could only handle so much, more tests wouldn't change the treatment, etc... I of course know this, but I don't want to hear it. It made me cry. At the time I felt like she was sending Ellie home to die.

However, after she left and I was able to think I could see what she was saying. She was saying they haven't found any infection or anything to explain the low body temp. So she was saying that she was good, she was fine. Yes she had a low body temp and low heart rate, but that is just ELlie, she has probably had that for a long long time.

She wanted us to come up with a plan to know what we can manage at home and when to take her in to the ER so we're not here all of the time. Which we already have a plan. I think the plan failed and we jumped the gun because we had missed the clonidine so her temp had fluctated so much in 1 week.

Anyway she also thought that the clonidine could cause low temp since it's intended purpose is to lower blood pressure. So I don't knwo if we should continue it. I felt like it was helping, but was I just hoping or was it really?

For now we are continueing it.

The neurologist felt very strongly that the bi-pap settings must be wrong and that is why she desatted. So we double checked and they were wrong. We have corrected it for tonight and I am really really really really hoping that it works tonight. That we don't have anything scary tonight.

I think we might go home tomorrow if nothing happens tonight. Or maybe the next day. They don't have any answers. They don't want to just keep running tests just because they can.

I feel positive about tonight and think that the bi-pap settings will make a difference. But I am also nervous.