Thursday, November 19, 2015

Sweet sleepy girl

I'm not sure how well Reagan slept last night. I'd venture to say possibly not at all! I woke up around 4am and found her in her bed completely squirmed out of her covers! I tucked her back in and went back to sleep but I don't think she ever did. She was still super sweet and smiley though, so who can complain about that?!?! No therapies scheduled for today, so when she decided to finally doze off and catch some z's...we let her! She was still out like a light at 12:15 when we changed her and got her loaded up into the car to get her tube changed out! I honestly don't know if I've ever seen her that OUT! She was completely limp which made it a challenge finding a comfortable position for her in the car! Actually I think that's what finally woke her up! Her head would hang so far back or so far forward, and then she'd gag! Once she woke up she kept gagging herself with her fingers down her throat. It was a little strange, because she hadn't been at all nauseous otherwise. She was great for the tube change. We had to wait for a bit in the office (we always do) then we had to wait again for a while for the doctor with her laid out of the table and she was such a trooper! The tube change went super smoothly although the doctor did note that she's still using a tube that would be appropriate for a 1.5yr next time we are going to increase the length of her gj tube (from 22 to 30cm). She also said that it's good to vary the length from time to time so you don't always have that tube resting in her intestine at exactly the same spot (giving a chance of erosion). All good things to one has ever mentioned any of this to us (changing it out 3-4 times a year you'd think someone else would pick up on this)! Anyway, Reagan stayed awake through the whole procedure and our drive home. Her teacher then came and worked with her for an hour but she was starting to get a bit more sleepy at this point and wasn't super interactive. Then shortly after her teacher left, she fell back asleep and slept til 11pm! She woke up when I changed her diaper to move her to bed and she was all smiles! Such a sweet girl! Hoping she can sleep tonight after sleeping so much of the day away!

This is her old tube...its yellowed over time but the black is not gunk but a tracer they use to see it on the xray (the balloon is deflated to remove it)! 

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