Friday, December 28, 2012
I was hoping we were past all the drama of this week, but no, not yet. Last night Reagan had the crazy laughs...ALL NIGHT LONG! She seriously laughed nonstop all night! This kind of laughing is definitely neurological and there's a fine line between the laughing nonstop and crying nonstop. There was a point where she was looking a little sleepy around 11:30pm or so, but she kept jolting back awake every time she'd drift off. So I gave her a dose of clonidine, but instead of helping her sleep, it seemed to do the opposite! She was wide awake and the laughing was out of control. This morning she was OK, but I could tell that she was a little on edge. She made it through PT without a problem and actually even seemed to relax and look a little sleepy at one point. Then her nurse went to change out her bag of formula and put Reagan in her chair and then all of a sudden she started crying nonstop and bit herself!! She bit her left middle finger right along the nail bed and broke the skin on the tip on the other side. There was blood and a lot of crying...although I'm not sure if the crying was due to her finger or whatever upset her in the first place. After an hour or two of crying...she did finally calm down. Her chorea has been out of control bad today (like she's running in place). We've also seen her throw both arms out a few times...which always makes us nervous (resembles infantile spasms movement)...but her nervous system is obviously completely out of whack right now (so hopefully its nothing to worry about). She's SO tense, she's sweating profusely (soaking her shirt and hair), but her hands and feet are like icicles. Ugh. What are we going to do with this girl?!?! I talked to her palliative care doctor today about attempting to better manage her pain. We're going to try Toradol (which was the only thing that helped her pain after her g-tube surgery) and also give Morphine another try (the first time we tried it, we only gave her one dose and it didn't do anything except give her a red nose and chin which might have been an allergic reaction). We want to try the Fentanyl patch, but he's hesitant to just jump to that without trying a lesser opiate first. So that's the plan. Still trying to fine something to help manage her discomfort on these bad days! Please keep it in your prayers that she can get some sleep tonight and wake up with some normal, happy days!!