Honestly, I was never hungry in ICU. Stress will do that to ya. Now that she is on the regular floor, it's so much less stimulating. Less people coming in, less medications, less restrictions, less assessments, less vitals.. just LESS.
We both slept well in our new room. So far, she really hasn't changed her mood. I see brief periods of my normal girl.. but very brief. It gets a little frustrating because it's so hard for people to assess her. I just have to keep reminding myself SHE is frustrated as well. She would give us all the middle finger if she could.
Jake's birthday was Wednesday and he was able to come down after work to hang out with us. Vivian loved it. She is obsessed with her daddy. Last year on his birthday, she had Hand, Foot and Mouth disease. What a stinker! ;-) Jake is such a trooper and just smiles through all of this. He was finally able to hold her Wednesday, which just made his day! And mine!
Medically, she is doing well. She is at risk for autonomic dysreflexia (or AD), which is a condition that can happen after spinal cord injury. Her blood pressure is higher than it should be, but the steroids could contribute to that.. or her absolute angst every time someone comes near her. They are monitoring her bladder because when it gets distended it and send them into "AD". So we are just watching her closely. She will be on IV steroids until Sunday and then taper oral steroids for a month. Oy.
Every. Single. Test came back negative. No one has any idea what caused this hell. All the fungi tests were negative. They have a couple random tests pending that take a month to come back but they "don't expect any of those to be positive". Oooook. My girl is a medical mystery. Awesome. I still have to ask them more questions, like... do we expect this to come back? Are we going to always monitor her? They did say they don't think our other girls are at risk since it is obviously something super rare.
Still minimal improvement when it comes to moving or sitting up. She remains "stable". Her legs are able to be manipulated out of the "frog-leg" position, but she doesn't love it. Her feet need some exercises to become flat because right now she has her feet pointed. They may require a brace. Later today, she will be going to inpatient rehab. That is JUST what my girl needs. They do therapy 3 hours a day! Yes!!! Monday-Friday she will have the same therapist. Saturday it'll be someone different, and Sundays are a day of "rest".
I'm ready to get her somewhere consistent and off her IV steroids. I'm hoping she cooperates better then. I still can't get anyone to tell me my girl will walk again or return to her baseline (which is perfect). I just WANT someone to tell me "this is going to be a long process, but I KNOW she will walk again". If I knew there was a light, I could handle this. It's just hard hearing "there is no way of knowing". UGH!!!! Give me my dancing fool back!
Jake and I have made a schedule for the next few weeks. I'll be with Vivi Monday night-Friday evening.. and he will be with her Friday evening until Monday evening. That way we both get time with our girls. And I think I'll always bring Bryn and Aubrey down Sundays to visit Vivian.
One day at a time.
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