Wednesday, October 5, 2011
Reagan slept the night through last night (thank goodness) and woke this morning in the same "none-too-happy" mood. She was a little whiny off and on but she did fine and made it through her early morning doctors appt without any meltdowns. This was our follow-up appt with cardiology to go over the results of the two 24hr Holter monitor studies she had done. This appt was also with a different cardiologist...one that deals more with dysautonomia (the nurse made a comment on how cold and clammy her hands were...hello, that's why we're here). The doctor mentioned that Reagan is much younger than most of the mito kids he sees with dysautonomia (who tend to be in their teens). He also seemed a little alarmed with Reagan's heart rate getting so high on her bad days (the "bad" day they have on the Holter monitor was just a MILD bad day...she's had much worse). He wants to put her back on the propranolol to try to decrease her heart rate (the last cardiologist took her off of it). His plan is for her to take it twice a day, once in the morning and once in the afternoon (and one more time at midnight if she's still up and irritable), for 2-3 weeks and then he wants to do another Holter monitor to see if her heart rate has normalized. So I guess we'll be adding propranolol back to the mix! Ugh...so many medications. Reagan fell asleep on our way home from the doctors office and was NOT happy when she woke up when we got home (she was the same way yesterday when she took a nap). She recovered though and had OT...although she wasn't too cooperative for her occupational therapist...I think they spent a lot of time just swinging on the swing. Then she had speech and she actually did amazingly well for speech (all things considered). This afternoon we've heard a few laughs out of her...no smiles, just laughs...but we'll take what we can get! We finally met up for Bible study (we've been off all summer long) and we were amazed at how well Reagan did in a very chaotic, LOUD environment (on an "off day")! She seemed a little overstimulated at times (with lots of yelling, banging kids around) but she held it together and never went over the edge! Tonight's another night nurse night, so at least I know Mike and I will be getting 7hrs or so of sleep tonight. Hopefully Reagan cooperates and gets the same (so far she's slept pretty much through the night every night the night nurse has worked so far)!!