Wednesday, November 30, 2016

New gj shorter tube

Reagan was awake and vocal early this morning. I'm not sure what time exactly, but she was NOT going back to sleep. Finally around 7am I went in there and found her laying in wetness! No wonder she was so vocal! I changed her and we moved her to her chair. She's been very vocal and spunky all day. This morning her tube was leaking big time and after the second total clothes change, I finally decided it was time to schedule a tube change! They were able to squeeze her in for a 1:30pm appt TODAY. Thankfully Grandpa was available to pick Ryan up from school and Reagan doesn't have any Wed afternoon therapies so her schedule was wide open! So this morning she had a great session of speech and then after lunch we loaded up in the car and went to get a new gj tube! I decided to go back to her previous shorter length tube (the last two she's had have been the longer tubes and it seems we've had more issues with them), I figured it's worth a shot to see if she seems to do better with the shorter one again. She did really well with everything and we were even able to direct the radiologist so that he inserted her tube in the correct orientation this time so it's not always wanting to turn in her belly. Hoping this will be a much better, less leaky tube this go round. We came home and I put her straight into her wheelchair for school! She did well with school and then we helped her poo and gave her a quick bath! It's been a busy day! Hoping she sleeps well tonight. She dozed off for a bit tonight but kept waking herself back up with her own snoring and then she'd laugh and laugh! She's also had her hands in her mouth a lot today and her little face is starting to turn bright red again. This girl! What are we going to do with her!

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