Wednesday, August 3, 2011
Reagan slept the whole night through...I don't think she moved a muscle all night! This morning we woke her up at 7:40 trying to change her out of her pjs for her cardiologist appt. We got there at 8:30am and didn't get out til after 11:30 (and still had to go get labs drawn). She did well, she smiled through the EKG and actually fell asleep during her echo. The doctor said everything looks great with her heart. No signs of cardiomyopathy (common with mito), no issues with anything really. Great news! She doesn't really think we need to treat her for her high heart rate (often times the body raises the heart rate to compensate for other issues), but she does want us monitoring her blood pressure (especially during her "bad" days) and if both her heart rate and blood pressure are getting too high, we may need to treat that just during her the bad cycles. She agrees that it's worth a try with the clonidine/diazapam to see if it helps the autonomic storms (although she seems to think it would be better to treat them as they come than to keep her on it all the time). One thing that she does want to do is send us home with a EKG "vest" and have Reagan wear it for 24hrs, just so they can watch her heart over a 24hr period. They want to do it twice, once on a good day and once on a bad day. They were actually going to put it on Reagan before we left today, but since she was so sleepy, I didn't really think this would have been a good representation of a normal day for her. I think we're going to head back first thing tomorrow morning and let them put it on her and she'll wear it all day and over night and we'll mail it back to them on Friday. Then next bad streak (presumably sometime next week), we'll go back in and have them put it on her again. The cardiologist we met with was very nice. She's one of two pediatric cardiologists that usually deal with the mitochondrial patients. She actually said the other cardiologist is probably a better fit for us (as she deals mainly with cardiomyopathy). He's an electrophysiologist/cardiologist that handles most of the mito kids with dysautonomia. So in two months we'll have a follow up appt to go over the results of the take home EKGs and talk to him about how Reagan is doing on the clonidine/diazapam. Reagan fell asleep in the car on the way home and slept the majority of the afternoon. She woke up for a couple hours and then fell right back to sleep again. She's a sleepy girl. We had to cancel both therapies scheduled today because she was out cold! Poor thing, during the short amount of time she was awake this afternoon, she started grunting and turning red. We assumed she needed to take care of some business...but nothing was coming out. I had to help her...she had the most rock hard (sharp) poop in there! I don't think she would have EVER gotten it out on her own (it barely came out with my help)! It was horrible. I felt so bad for her. I don't know why the Milk of Magnesia isn't doing the trick anymore. I think we're going to have to step it up a notch and give her a little more every day. Hopefully that will help! Tonight our girl is still really sleepy. She woke up for a short while but was hesitant to even open her eyes. She's back asleep now and hopefully she'll stay that way all night. My back is KILLING me and I don't know if I could get up in the middle of the night even if I wanted to!!! Hopefully we all get a good night's sleep tonight!