...your eyes saw Amelia's unformed body.
All the days ordained for Amelia
were written in your book
before one of them came to be.
~ Psalm 119:16 ~
Between 9 and 10 a.m. this morning, Amelia began improving again. Her irritability, leg stiffness, neck and back pain, and light sensitivity began to fade. By about 11 a.m., she was back to roughly the same level she was at yesterday. As you can see from the photos, she enjoyed a short game of Candyland with Uncle Nick and Auntie Sarah. She also ate some lunch, and sat up reading books and playing with toys with various other relatives. Her right eye continues to be crossed almost all the time now, although the eye twitching is improved. This is somewhat concerning because the crossing of the eye indicates the involvement of a different cranial (brain) nerve than the eye twitching did. She continues to be easily overstimulated, more tired than usual, and kind of "shuts down" when anything changes in her physical environment. She did take some steps holding on to our hands today, but is still very uncertain about her balance, tipping backwards and having trouble getting her body to go forward instead of stumbling backward. Her gait seems about the same as it has been since Tuesday, in my motherly opinion.
Her lab work shows an elevated white blood cell count still today, still with the left shift that indicates a bacterial infection. Her spinal fluid has come back negative for a variety of other viral genetic tests, but still shows an active meningitis pattern, according to the neurology team. We had several doctors spend an hour and a half or so in our room, observing Amelia and allowing her time to warm up to them before continuing their assessments. I feel like today is the first time she has given her two main doctors (pediatrics and neurology) a real idea of what she is capable of and where her deficits lie. They both feel that her deterioation throughout the night was due to lying down, which can increase the intracranial pressure. We will try keeping the head of the bed elevated tonight and see if that makes a difference in her nightime status. They are watching her very closely for any signs of worsening intracranial pressure or infection, as they have now stopped her antibiotics and may consider stopping her antiviral as well if it is not making any significant improvement in her lab work or her neurologic deficits.
So, mostly good news for the moment! I apologize for dragging you onto this rollercoaster with us...feel free to get off at any time! We wish we could!
Her lab work shows an elevated white blood cell count still today, still with the left shift that indicates a bacterial infection. Her spinal fluid has come back negative for a variety of other viral genetic tests, but still shows an active meningitis pattern, according to the neurology team. We had several doctors spend an hour and a half or so in our room, observing Amelia and allowing her time to warm up to them before continuing their assessments. I feel like today is the first time she has given her two main doctors (pediatrics and neurology) a real idea of what she is capable of and where her deficits lie. They both feel that her deterioation throughout the night was due to lying down, which can increase the intracranial pressure. We will try keeping the head of the bed elevated tonight and see if that makes a difference in her nightime status. They are watching her very closely for any signs of worsening intracranial pressure or infection, as they have now stopped her antibiotics and may consider stopping her antiviral as well if it is not making any significant improvement in her lab work or her neurologic deficits.
So, mostly good news for the moment! I apologize for dragging you onto this rollercoaster with us...feel free to get off at any time! We wish we could!
2 comments:
Gen,
This is great news! And tell Amy that I wish I were playing Candy Land with her...it's one of my favorite games. :) We're sending our love and prayers from the Chippewa Valley!
My prayers and communion will be offered up for your family tomorrow.
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