Tuesday, September 4, 2012
Reagan and Ryan both decided to wake up around 6am this morning!! Reagan was talking and rolling around and then Ryan started up, so I just got up with both of them. We had a 10am appt to get her gj-tube changed out so it's probably good that we got an early start. For those of you that don't know...a gj-tube is changed out more often and is much more difficult to change out than your typical g-tube (that you can do yourself at home). The gj has both a g part (that sits in the stomach) and a j part that is fed down through the stomach and rests in the upper portion of the jejunum. Texas children's hospital does tube changes without any anesthesia and that's the way we like it. It doesn't seem to bother Reagan in the least (with some kids it actually hurts) and we've never had any problems getting it done...for which I am very thankful (I know of many kids that have a heck of a time trying to get these things placed). Anyway, other than being forced to valet our car because the parking garage was full, everything went smoothly again today. They took her back to a sterile room (so I wasn't allowed back), but they were literally only gone maybe 10min and then she was back again! Done! While on the topic of feeding tubes, I just found this neat resource so I thought I would post a link to it. I was looking for information on places to get cuter backpacks for enteral pumps...but there's lots of good info through this website. Once we got home from getting her new tube, she had her first day of school, physical therapy, and then vision therapy! A good day for a girl who continues to vocalize in not so happy yells all day (we're worried about where she's headed with this...so keep it in your prayers that she stays good)! This afternoon she had a HUGE blowout of a diaper. Probably one of the worst ever! We wiped her down and then headed straight to the tub! Poor girl. Those antibiotics are really kicking her butt (no pun intended)! I'm hoping she'll wind down and get some sleep tonight. Right now she's full of energy... crazy yelling and rolling all over the place (and of course, hands in the mouth)! We've got a 9am appt with the special needs/palliative care doctor...I want to make it to this one!! Prayers please!