Back in the hospital

We made it about 45 hours post discharge until we were back in the ER.  Her agitation was excruciating to watch because she was so extremely uncomfortable.  It was almost like she was constantly trying to crawl out of her skin.    We were admitted after a quick stint in the ER, and we have been here since (this is our fourth day).  Again, my facebook posts…

Monday, 5:21 pm:  Hannah has been readmitted to the hospital. Incredibly agitated and in pain, thinking severe klonopin withdrawal, as Ativan isn’t helping much. Same room, same passcode.

Monday, 7:35 pm:  Hannah is finally sedated and sleeping and considered PICU status – on a Versed and Precedex drip. Plan is to reintroduce the Klonopin, which takes 48 hours + to take affect in her system they hope. Hopefully will only be here a few days.

Tuesday, 9:11 am:  Hannah had bouts of agitation last night, but was sedated through most of it. Not feeling confident at all about the attending we have this visit (will explain later), so I have started the process in getting rid of him and getting her neuro to be in charge (or another attending who we trust).

Tuesday, 2:15 pm:  Hannah’s neuro came by today, and he is going to stay on top of all this. Learning politics of hospital…suck! He told us to plan to be here about 3 more days just to make sure she gets on the Klonopin safely. Brain MRI tomorrow just to rule out any other issues. Going to start decreasing sedatives tonight and restart feeds. Tired of seeing her sedated all the time! Missing my smiles…

Wednesday, 9:57 am:  After a really rough day worth both a crappy doctor, hospital politics, and a horribly agitated Hannah al l day long, Hannah is finally on the road to recovery and feeling better thanks to amazing nurses who fought like hell for her and her wonderfully compassionate neuro who got caught up in the politics but still got things accomplished!

Wednesday, 9:41 pm:  Rough afternoon. Agitation returned this afternoon big time. Meds aren’t helping except chloral hydrate. Withdrawal no longer the likely cause. Lots of consults tomorrow including neurosurgery, gi surgery, NIH conference call, etc. Hate seeing her so miserable.

I’m very nervous about what tomorrow will bring…all I know is that it is almost unbearable watching her constantly uncomfortable and agitated to the point she doesn’t want to be held for any length of time.  We need to find a way to give her some relief.

Neuro gave her phenobarbital tonight, and that finally gave her some brief relief.  She has been out for about an hour now.  We also have chloral hydrate, the only thing that has worked that gives us a few hours, if she wakes up from the phenobarbital.

Will know more tomorrow.