Challenging

“Challenging” is a word I have heard used to describe Hannah more times throughout her life than I can count.  Just once, I wish she could just not be so challenging.

We are still trying to find the right combination of meds to balance her agitation and movement disorder in order to give her body peace yet give her some awake time so she can feel love from all of us.

Saturday was pretty bad, but Sunday was progressively worse.  She would sleep for only a couple of hours (from the chloral hydrate), and then wake up really agitated.  We would then have to watch the clock until that 4-hour mark just so we could knock her down again.  That went on all…day…long.  It was hell.   Finally, I called our nurse coordinator that night begging for help.

She talked to Hannah’s hospice doc, and they agreed to give her an extra shot of phenobarb as well as increasing the haldol from 0.1 mL to 0.25 mL and see how she responded.

What a difference!  She woke up at 8 am (after getting her last chloral at 4:30 am), and she was not agitated!  It was almost bizarre because we were expecting it.  What is even crazier is that she stayed awake until 2 pm – 2 PM!  We gave her benadryl to see if she could sleep around noon because she was really tired, but we don’t know if it took a while to kick in (or just didn’t work), but she actually fell asleep on her own around 1:00 pm!   She slept for about an hour, and then at 2 PM she woke up agitated again, so we had to resort to the chloral.

It was so nice to see her somewhat comfortable for a few hours.  She really doesn’t react to us much anymore, but she seems to respond to our voices on some occasions but trying to turn her head to us.  Sadly, there were no smiles during this time, no matter how hard I tried to get them.  Fortunately, our Monday  nurse (who we had to fight to keep on Mondays) was so loving with her and basically spend the afternoon rocking her and cuddling her (while I slept).

She slept for a few hours, and then she woke up again in a pretty less-agitated state.  Daddy got to spend time with her, holding her, and then she fell asleep on her own (with the help of benadryl) at 7 pm.   Again, ON HER OWN!

She just woke up around 11:15 pm when I am “on duty,” and she was horribly agitated within minutes of waking up.  I gave her midnight meds at 11:30 pm, and I waited desperately for them to go into affect so she could calm down.   She was just too miserable.  Hearing her squirm (the only time we hear sounds from her mouth are when she is upset), I just had to give her the chloral again at 12:30 am.

It seems like she is really getting agitated when she wakes up within a couple of hours of her three-times-a-day meds (8 am, 4 pm, and midnight).  Maybe I’m just trying to find a pattern, and it was just a fluke?

I would give anything for her just to be comfortable and not experience this intense agitation again.  I hope her body lets us comes up with a plan of care that will let us do that.