They kept Vivian's blood pressure up since Saturday night, and today, they discontinued all the medications keeping it up, excluding the steroid. They removed her femoral line, her arterial line, both her IVs and her feet and her IV fluids. My girl is officially disconnected from everything. She only has 2 IVs left!!! We remain in the ICU because neurosurgery wants to keep a close eye on her mobility, but we should move to the regular floor tomorrow. I love our ICU room. They say it's the biggest room in the hospital! But I'm ready for have less stimulation for my girl. Parents also can't eat in the room while in ICU. They have a break room on the same floor, but not near where we are. So basically, I sneak snacks and don't eat meals if no one is here to relieve me. I mean, how are you supposed to leave your scared 2 year old alone?! You can't.
The increased blood pressure did seem to help a bit with her mobility. She still doesn't move her forearm, wrist or fingers much.. but she is gaining strength in her shoulder, triceps and biceps. Little bit at a time. Her legs were "frog-legged" which is just the way gravity lets them fall, but isn't how she should be holding them, so we are working on getting them into a normal placement. However, it just takes time as well since she is so tight.
She was placed in her back brace. Because she had such a large surgery and she is so young with soft bones, she is at a very high risk for spinal instability. This would be corrected by placing hardware in her spine. No, thank you!!! So, this back brace is supposed to help with that. She will have to wear it constantly for 3-6 months. She will be reevaluated frequently to see if it's working. She may still need surgery, but I will make sure I do everything I can to avoid it.
We will be here for... awhile. Next Monday, the plan is for us to go to inpatient rehab here. We will be there for a few weeks. She has a lot to do to get mobility back. I knew it would be like this going into it, but.. it doesn't make it any easier. It's hard explaining her "baseline" before surgery vs. now. It's tough to swallow. I asked the neurosurgeon if Vivian will walk again. He said "I don't have a reason why not..". Nothing happened during surgery that would explain her not regaining her strength and mobility. I just hope she participates. The steroids.. situation.. it's all making her a totally different kid. She is so frustrated, grumpy and says "uh uh!!!" or "no" to 95% of what we ask. It's really depressing.
Today she worked with PT and OT for the first time. Just a couple little movements. Then, they sat her up with me in the chair. I got to hold my baby!!! I know she was happy and felt very calm, but wasn't my typical snuggly, loving baby,
My Bryn is still in Tennessee loving life with her cousins, Aunt Heather and Uncle Jud. She is being spoiled rotten!! Bryn, her cousin Deacon and Aunt Heather went to the zoo today. How stinking fun!! She will be home Sunday and I can't wait to squeeze her!!!! Aubrey has been staying with my parents. I'm obsessed with the pictures and videos I keep getting. She is such a good baby. Once we are out of ICU, my babies can visit. Not that I'm thinking they will be at the hospital often while she is here medically, but it'll be nice in rehab to have my babies together.
We are slowly getting there. It's been a roller coaster of emotions so far. I know we have bad days ahead of us and good days.
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