Wednesday, January 1, 2014
We're not sure how much Reagan slept last night. She was asleep when we went to bed, but around 2:45am Mike saw that she was awake. He went in there to try to get her back to sleep, but she was fighting him and even fussing a bit, so he eventually just left her alone and she quieted down but was still awake. When I woke up around 7:15am, I could hear her pump beeping. I went in her room and found her completely upside down in her bed (twisted up in her feeding tube)! She was wide awake and grinning from ear to ear, what a sight for sore eyes! So happy to see my girl!! She was a doll all morning. Super sweet and snuggly. Less chorea but her hands and feet were still pretty cold and you could tell by looking at her that she was beyond exhausted!! And no wet diaper! That's right, not since 6pm last night. She's definitely holding her urine again and I just figured out why. Her doctors have us giving her periactin as needed on her nauseous days. I haven't really noticed it helping much with the nausea but we are seeing an unwanted side effect of urine retention (that she's experienced in the past see blog post from 2010). Definitely time to discontinue that med...for whatever reason, her body just does not agree with it! Her last dose was Monday night and yesterday she only had two wet diapers (big ones, but only two) and today we're still dealing with it! Finally around 10:30am I gave Reagan a dose of Lasix and held her strattled on my lap (hoping she might let it flow)...instead she dozed off! We put her in bed and she's been sleeping ever since! So glad my girl is finally getting some sleep (she SO needs it), but sleep is not helpful in getting her to pee (she usually holds it when she's asleep)! This afternoon I pulled out all the stops, I tried everything I could think of to try to get a sleeping kid to pee (steady pressure on her tummy, hand in warm water, a heavy warm neck pillow over her bladder)...nothing! Finally tonight at 7pm I tried the pressure technique again and she moved her legs around a bit and then finally went! Whew! Never been so thankful to change a pee diaper! So my girl is still asleep and hopefully she'll sleep through until tomorrow! She's got a lot of catching up to do! Thank you for keeping her in your prayers...this was a really rough bad streak for our girl.