Riley is doing okay. She's very very sleepy. In fact in the last 10 hours that I have been here she has maybe opened her eyes twice and one of those instances was when they did a finger prick to get more blood for labs. :(
I am really missing those pretty eyes. But I know she needs to get adjusted to this new med and really if the only side effect she's experiencing is sleepiness then we'll take it. When she first started the ACTH she was super aggravated (roid ragey). This is much more peaceful.
They are continuing to wean Riley off of the ACTH. Yay! Overnight, Riley did not have any seizure activity and all day today she's been very calm and we haven't had any reports of seizures from the monitor room. All very very good news.
The goal now is to get the Depakote to a certain level in Riley's system. Right now they are aiming for a level of 125. What that means exactly I don't know. All I know is that before we can go home they need to make sure she is maintaining a certain level of the medication. So in order to accomplish this they are giving her 2 regular doses a day (which have been adjusted multiple times already) and then they give her IV doses if they test her blood and it's not at the level they want.
For example this morning her Depakote level was at 92. Down from 96 last night. So, they gave her an IV dose in addition to her bolus dose. Her afternoon labs showed her level at 136. Which was great but.... it was 1 hour after the IV dose. So, she'll get her regular dose tonight and then have labs again in the AM.
Please send prayers, good thoughts, vibes, whatever you've got that her level is where it is supposed to be in the morning and that she continues to show normal brain activity without seizures. We are beyond happy that after weeks of hospital stays, worry and med adjustments they may have finally figured out a cocktail so to speak that will help keep the seizures away.
So now we wait...once the meds are figured out and the doctors feel the seizures are under control, we can GO HOME! And once we do leave we don't plan on returning as inpatient for a long, long time. Hey, one can dream!
Thank you for your continued love and support. It really means the world to our little family.
Dave, Megan, Logan, Mason and Courageous Riley!