Thursday, December 19, 2013

So so SO sick of nausea!

It's so frustrating for us, just in the last month or so Reagan is experiencing a resurgence in her nausea! We thought the change in formula was attributing to the decrease in symptoms, but then just lately, without any change in her formula or medications, the nausea is back in full force! It's very discouraging! The bad days have also gotten worse (longer and more severe, less sleeping). SO frustrating! The palliative care team at dell is trying to organize a care conference for Reagan. Where all of her doctors will get together and try to problem solve for our girl! I'm hoping they will not only discuss how to treat her symptoms but also get to the root of the problem! What is causing this? How can we prevent it? That's our Christmas wish! We want to improve her quality of life! Why can't a family dealing with mito win the mega millions?? Can you imagine what that would do for the mito community? All of that money poured into mito?!?! We'd have a cure! OK, enough with my rant! On to my girl...she had another rough night last night! She was sleepy but not really falling asleep! The clonidine didn't do anything and then a dose of Lortab actually did the opposite...making her irate! The first fussing from her all day! Not good! She finally dozed off but probably not for long. She woke us back up around 3:30am with a throw up. She eventually dozed back off...but it was another rotten night for my girl! Her day wasn't much better! Lots of gagging/retching all morning. She did have a couple of periods where she was slightly improved and she even had visits from both vision and OT. Clonidine helped her to settle down a bit this afternoon, but tonight it's doing the opposite! What are we going to do with this girl?!?! She's definitely escalating tonight. She's getting more and more agitated (who can blame her)! Her poor little red nose can't take one more rub! The nausea has picked back up and she's grinding her teeth like crazy! I don't know if she's ever going to relax enough to sleep! There's not much more we can do to help her...except pray! (SO FRUSTRATING!!!) Please pray that she gets over this ASAP! She SO needs some rest! (Did I mention I was frustrated?!?! Ugh!!!)

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