Wednesday, September 10, 2014

OK day, tense night (and new tube)

It's been an OK day for Miss Reagan. She slept in her own bed until around 7am or so. She was sweet but still a little sensitive today (especially to loud noises or talking). She had speech this morning and then we drove in to Dell to have her gj-tube replaced. It's been a little leaky, but she's had it for 4 months, so it's time for a new one (we're not waiting another 6 months again until it breaks)! Despite being told that 12:30pm was the ideal time for an appt, we waited 30min in a waiting room full of crying kids and then waited another 30min or so in the x-ray room for the radiologist! The radiologist was particularly chatty (not necessarily a good thing for Reagan) and when she abruptly pulled the x-ray over Reagan she nearly lost it! Well, she did lose it for a second, but we were able to calm her down and she was fine for the procedure. Everything went smoothly and we were on our way in no time. Reagan did seem a little agitated the rest of the day, we thought maybe her tummy was hurting her because of the procedure and the fact that she had a big gassy poo earlier in the day. She tolerated the teacher just fine but then wasn't a huge fan of the loud tv or her brother tonight. She was definitely tense and we weren't sure what was causing it. At one point I picked her up to change her diaper (and she did fine with that), but as soon as I tried to pick her up and hold her, she freaked out! Tons of tears! Lots of crying. I eventually just put her back in her chair. She calmed down but was never quite right the rest of the night. I gave her clonidine around 10pm to try to help her fall asleep and by 10:30 she was freaking out again and crying hysterically. Eventually around 11pm I gave her a dose of Lortab which finally helped her to settle down and fall asleep! I'm not sure what's going on with her. Is it tummy related, is it neurological?? No clue. I'm just hoping and  praying she sleeps tonight! Ugh. I'm still so on the fence on what to do. Do we change her over to the ketogenic diet now, do we wait?? I hate making these decisions! Please pray for us!

1 comment:

Clarissa said...

so hard not knowing WHAT is causing the pain, crying, etc. :( Praying she feels better quickly!