Morphine Monsters

Sorry for missed post yesterday.  It was pretty stressful here.  It was the last day for the antibody; we followed the pain med regimen that had worked for the prior two days annnnnnnndddddd while Lisa didn't scream with pain, she was crazy out of her mind! She had gone "hog wild" and "was one fry short of a happy meal". 

We had given her morphine 2 hours before infusion, gave her ativan15 minutes before infusion and the morphine again with the infusion, just as we had done the days before. The first hour went fairly well, but then instead of going to sleep like she normally does on this drug cocktail, she started to get agitated.  Rather than give her more morphine, we opted to give her another does of ativan with the hope that it would calm her and knock her out.  Well that didn't happen....while she would doze for minutes at a time, she never fell asleep.  She spent most of the morning agitated, whining and talking back.  As the afternoon rolled around, she was completely spaced out and wasn't making any sense.  I would say she was talking in her sleep, except...she wasn't sleeping.  ARGH!  As it got later in the day, she started seeing things.  It was very creepy.  She kept pointing at things and asking me who or what they were...I couldn't answer her because there was nothing where she was pointing.  As time went on, it got even worse.  Every time she would drift off to sleep, she would bolt awake and be terrified by something.  One time it was a monster, one time she kept hitting and slapping at her arm because there were spiders on it, another time she kept trying to hand me some non-existent pants.  We thought things would get better as time wore on and the drugs wore off...no such luck.  Now she was waking up and screaming there were dogs behind my head or she would look asleep but the would keep reaching out for things that weren't there. She kept pointing and saying she saw Daddy, she was seeing other friends as well and would tell me what they were wearing.  As it got later in the evening, things started to get more intense. She would wake up and try to stand up on the bed.  The one time as tried to stand she was screaming  "pick me up, pick me up, get my legs off the bed"  apparently she thought there was snow and she didn't want it touching her.  I was afraid to leave her alone because I thought she'd ended up trying to fly or something.   Finally at midnight, I climbed into bed with her.  The ramblings continued but at least I could hold onto her and make sure she didn't hurt herself.  She spent a lot of the night pointing at things and whimpering.   As 4:00 rolled around and the nurse came to do vitals, I got a bad case -of the "what-ifs"...what if the antibody or drugs did something to her brain and she would be talking crazy forever, what if we made the wrong decision in taking this treatment on, what if we traded in her quality of life that had been pretty good for a life of hallucinations....too many what ifs.... I got out of bed and helped Lisa go to the bathroom.  She wasn't talking crazy anymore, but she was talking mean and bitchy... a sure sign her temp had spiked again. We got her some Tylenol and I was sure she would go back to sleep.  Unfortunately once the Tylenol took effect, she started complaining her neck and legs hurt.  I tried to convince her to go back to sleep, but she took it upon herself to buzz her nurse and ask for something for her pain.  Morphine, obviously, was off the list so she got codeine.  Jury is still out on that, she took it about a 1/2 hour ago but is still complaining about pain AND she's already tried to stand on the bed and was pointing at something I couldn't see.  It's 5:30 now and I'm praying real hard that something kicks in and knocks her out for a while. In the past 3 days,  I've had no more than 3 hours consecutive sleep and total sleep has probably been around 15 hours.  If we don't get her settled down so I can get some sleep, I'm going to need the morphine or ativan.  The poor people walking around St Jude, bless their hearts, better steer clear...I'm feeling mighty bitchy...wonder if I could just saying I was spiking a fever!