Tuesday, November 29, 2011
Reagan slept fairly well last night. She woke up several times fussing but each time she went back to sleep fairly quickly. When she finally woke for good, right around 7:45am, there were no smiles to be found. She's been very tense and serious all day today. She's had a few whiny moments but overall she's been pretty quiet. Very frowny though. A constant scowl on her face. She's in one of those moods where she's almost happier kinda zoned out sitting in her chair rather than being held. Her hands and feet have been ice cold but her body gets sweaty very easily and her heartrate is averaging in the 150s. Definite signs of dysautonomia. This morning we took her in for a GI follow-up. Our appt was at 9:30am but we weren't seen by the doctor til after 11:30 (and that was until I spoke to a nurse and complained about the wait). We have this problem literally every time we've been to see GI, but today I had my own doctors appt at 1:30, so we were in a bit of a hurry. We spoke to the GI doc about Reagan's episodes of dysautonomia. He thinks slightly increasing the nortriptyline might help her with the nausea on the bad days...so we'll probably try that. He also mentioned some other medications to "think" about to potentially help with the motility issues. Most of them have potential side effects that are even worse than the issues at hand, so as of now I'm not really willing to consider using any of them. So not a lot to report. He seemed happy that her "episodes" had lessened for a while but didn't really know what to suggest to help now that they are back. It's such a guessing game with this girl. This afternoon she had PT and actually allowed her therapist to work with her...which is surprising considering the way she was feeling. Poor girl. You can just tell she feels horrible during these times. I so hate that she has to go through this. If only we could figure out how to get her back to where she was before. Ugh. I hate these bad days! Please keep her in your prayers.