Friday, October 21, 2011

From PICU ... to HOME!

Tomorrow morning, as long as the neuro says there are no seizures on Addison's EEG, we are allowed to take her home with her NG tube. They delivered our IV pole and pump tonight to the room, and that's when I got nervous! I am about to put in my first one alone in a few minutes, I just hope it goes smoothly and I don't hurt her. I decided we will take it in and out everyday when she is not sleeping, so that she doesn't have to go around in public with it on. I already get enough stupid comments as it is without people seeing something obvious like that. Since she is only tube fed at night, this is not a big deal to take it out. The plan is to track her weight for 4 weeks on the NG, she will be tube feeding 12 ounces of formula while she sleeps every night, bringing her daily calorie count to ....
are you ready for this ladies???
1388 calories a day. 

Yes, I'm aware that most of us 120+ lb women eat this much food sometimes, and my daughter weighs only 14 lbs, but we DID see a huge increase in her energy level tonight so we can only hope its not a fluke and that even though we don't know *why* she needs so much, either way, she's getting closer to what she needs to grow.

Her MRI was normal! That was amazing news, it doesn't mean her regressions aren't happening, it just showed that her brain isn't damaged in any way - that gives us a lot more hope for getting some of those lost skills back (see the next post for a complete list of her regressions).

The rest of the the testing wont be back for a while so we have to be patient on that, but I feel so great that we've been able to speed up this diagnostic process, especially because her development has been so poor the past couple of months.

I'll be sure to post as I receive results, but suffice to say, I am feeling good about all of this and ready to take on whatever this diagnosis turns out to be!

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