Sunday, January 12, 2014


I feel I'm beginning to sound like a broken record. Last night was another rough one. Reagan was nauseous (and agitated) and not falling asleep so I laid beside her on the bean bag chair. I'm doubtful that she fell asleep, but I did. I woke at 2am to find her awake and kicking beside me. I gave her clonidine and I laid down in bed. She woke us around 3:30am crying and we both got up with her. I tried giving her Lortab and then ibuprofen an hour later, but nothing seemed to help. She's exhausted, she NEEDS to sleep, but her body is fighting against her! It's brutal. Watching her suffer like this...this is one of the worst bad streaks in a really long time! Today is day 6 and it's just as bad as day 1. She's crying and thrashing and biting and flailing...the only improvement over yesterday is that she is sleeping here and there. When we give her medicine (that should knock her out), she's able to sleep for 15, 30, even 60 minutes before waking up crying again (yesterday nothing was working). There have been many talks about putting her in the hospital. She needs to be sedated and nothing we're trying at home is working! But putting her in patient carries many risks (including exposing her to countless infectious diseases that could realistically kill her). If they heavily sedate her in the hospital, how will we even know when her bad days are over? When do we unsedate her? And sedation alone is a scary thing! She's already been overdosed once by a physician error and almost lost her life because of a sedative. But the pain that Reagan is going through is indiscribable! We need her to snap out of this, and soon! Our dear Lucy is in the hospital right this moment losing her battle with mitochondrial disease because of pain! I can't even begin to say how heartbroken I am for this family. Mitochondrial disease is a horrific, cruel disease and it's taken the lives of way too many precious angels. Please keep Lucy and her family in your prayers and pray that Reagan has a dramatic turnaround so we can avoid the hospital this go round.

1 comment:

Clarissa said...

Tera, Praying hard for you all! If it's any comfort, know that Abigail has had many hard days of continuous pain (screaming, crying, movements non stop, no sleep for 60 hours or more, except 10 minute naps a few times a day, etc). And during those time, nothing helps.. not even diazepam or clonidine... but since using those both every day, no matter what... she is more stable. I know that just because something works (a little) for Abigail, it for sure doesn't mean it'll work for Reagan.. but our experience is that givng clonedine every night around 8pm and diazepam 3 times a day, no matter what (even on good days), it has improved her over all. I know you are grasping at straws and want what is best for your baby girl, so offering my (measley) advice... I am sooooo sorry you are going through these horrible, painful days! Praying for relief!! Love to Reagan and you all! God be with you and strengthen you! *hugs*