I wrote at length of affairs of my spirit and heart, realizing I forgot the details. To hear how I'm doing, read the previous post. Here's the details of Amy's day from a clinical perspective.
Amy's spinal fluid came back with a similar white blood cell count (infection marker) as it showed on Tuesday. However, it now shows a predominantly viral pattern, while Tuesday's test was more inconclusive, showing some patterns consistent with bacterial infection and some consistent with viral. In that sense, the picture has cleared a bit.
Amy's spinal fluid is negative for swine flu (H1N1) and herpes simplex virus (one of the most fatal - but most treatable - options, the virus that causes cold sores). These can be false negatives, so Amy will continue to be treated until the 3 week cultures come out clean for these bugs regardless of early negative test results. We are now praying hard that the early tests will show an exact cause, and praying that it will not be something that traveled from her stomach or intestines, as those tend to be the most untreatable and the most fatal.
Amy's nasal cultures were negative for respiratory syncytial virus and all types of influenza. Her urine cultures are negative, as well as her throat culture for strep throat. She still does not have a fever, remains on triple antibiotics and the antiviral treatment.
Amy has continued to have lots of energy today, sitting a lot during the day and even taking some steps while holding hands with us, from her potty chair to her bed. She continues to have significant tremors, especially when she is trying to do something with her hands. Her eyes are still showing some mild jerking, and this evening, her left eye started crossing to the middle whenever she tried focusing on something in front of her (near or far). Her pupils still look great, and her strength is still great in her arms and legs. She continues to have some abnormal posture, arching her back while lying down, and keeping her feet stiff at all times, toes curled under. I started some passive range of motion with her in bed yesterday and have continued doing that every few hours to maintain her flexibility (hopefully). We also started doing some fine and gross motor therapy in the form of action songs in bed! She loves that and it is a great chance to help her maintain her current level of function.
Lastly, Amy's vital signs have been a bit more concerning tonight. Her blood pressure is fluctuating a lot, from on the lower end of normal to quite high for her age. This can be an early sign of changing intracranial (skull) pressure, so that is something to pray about. She has also had a much more rapid heartrate, which can be an early sign of distress. Her heart rate while sleeping is now in the 140's. It had been in the 70's-80's for several nights. So that is something to pray about as well.
That's it! The only other news is that she ate like a champ today (a good sign) and pooped, too! I'm sure you wanted to know that!
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