Tuesday, September 27, 2011

Fighting off bad days

Last night we had a night nurse again. From what I was told, Reagan woke up a couple times and made noises and moved around but then fell back to sleep each time 5-10min later. I woke up this morning to the alarm on her pulse ox (which she doesn't really need but the night nurse insists on her wearing). Her sats dropped down to 94-95 for a minute or so and set the alarm off, which is ridiculously loud, so I'm surprised it didn't wake her up! She was actually still asleep at 9:15am (and we had to leave for her neurology appt at 9:45am), so we started dressing her and that's when she finally woke up. She was very quiet and solemn. No smiles or laughs this morning. She was still a little sleepy and dozed off for a little while during her neuro appt. Her current weight is still 38lbs (she hasn't gained any although she feels heavier) and she's 106cm (41.7 inches). We're pretty sure she's gotten taller. We put her in her umbrella stroller today and her feet are hanging so low, they almost touch the ground!!! Today's appt was with the neurologist we switched over to when her previous neuro moved back to the North East. This was our first time to meet her. She's very tiny and meek. Not much personality, but then again, not many neurologists have much of a personality. She asked me to recount Reagan's seizure history from the beginning since she's an epileptologist (oh great...for the 200th time). It's actually been almost a year since Reagan's last EEG (I can't believe it's been that long), so she's going to order a 24-48hr portable EEG to be done in the home (hooray...no hospital)! She also ordered some blood work, because two months ago when her previous neuro checked Reagan's Banzel levels they were pretty low (12)...so we may need to increase that again (just to prevent any breakthrough seizures). So, the jury is still out as to whether or not I like this neurologist. I like the fact that she's still in contact with Reagan's previous neurologist, but she is pretty young and less experienced. I like the fact that she's at the same hospital, but I also don't like that because of all of the red tape surrounding this hospital and never being able to get a hold of your doctor when you need them. So we'll see. For now, we'll stay put. When we got home from the doctor's appt, Reagan had PT and the DME rep also came by to finalize the details on her wheelchair (the most important thing...we decided to go with a shimmery purple instead of the dull pastel pink...why don't they offer it in fushia?!?!). Then she had "school" at 3pm. She did let out a fuss/yell a couple times, but I think she was just being overstimulated, so her teacher laid off and she was fine. We noticed on our trip in the Bahamas, there were a few times when she got overstimulated (by music or too many people talking at once) and she'd fuss or yell out to let us know. She's definitely still fighting off the bad days. She's had a low grade temp (99) in both ears today and she's been a little spitty/gurgly and had a huge throw up (that came out her nose...some of it was yellow bile) while we were waiting for her doctor's appt this morning. She's given us a few laughs today but each time they sound pretty pathetic and like they could end in a cry. Overall, she's been hanging in there, her mood has been pretty mellow and her hands and feet are going back and forth from cold/clammy to normal. Hopefully she pulls through and avoids the bad cycle altogether again! Fight it girl! You can do it!!!


Jamie - AZ said...

Feel better sweet Reagan! I will be saying prayers for you. So happy that you guys had such an amazing vacation. The pictures were so beautiful!

Muriel said...

From the sound of Reagan's neuros, did she have Dr. Riviello before and Dr.Masters now? If so, we are on the same boat!