Amelia has sat up for quite some time today. She is still arching her back somewhat, and as you can see in this photo, her eyes don't track quite right nor are all of her facial expressions symmetric. However, things seem to be going in the right direction for now. Her antibiotics have been restarted because there is still uncertainty about the source of the infection. Haemophilus B influenza and one other common bacteria latex assays (rapid screening tests) came back negative in her spinal fluid. Her spinal fluid is showing no neutrophils now (markers of bacterial infection); neutrophils were present in her previous spinal tap from Tuesday. However, there are more cells indicating viral infection now than there were then. There is some question whether they have effectively been treating the bacterial infection, and the viral infection is just now becoming more apparent and more aggressive as there is less competition for nutrients. Two of the three teams of doctors feel her improvements are from the lowering of her intracranial pressure (pressure around the brain) due to the drawing off of some excess fluid during the spinal tap. They are hopeful that the antiviral medications will begin to lower the inflammation in her brain by the time the fluid has time to build up again (2-3 days). Unfortunately, that means we won't know for 2-3 days whether her improvements are "actual" improvements, or just related to the spinal tap and therefore temporary. We'll take what we can get! A kid who can smile, talk and sit is a far cry from one in a stupor, lying flat on a bed!
Here's a picture of what motivated Amelia to sit up in bed this morning! She got some much-longed-for visitors for the kids Halloween party on the pediatric unit today. Katy is dressed as Robin Hood, Rosy is Maid Marian, and Caleb is Friar Tuck. As you can see, Amy is a bee - I'm not sure how that fits their theme, but the kids have it worked out somehow! The girls were pretty pleased to see their sister sitting up in bed smiling at them, as you can see by the ecstasy in their faces!
We are so grateful for this reprieve. Please pray that the antiviral medications will kick in quickly and we will see real improvements starting next week. Amelia will begin physical and occupational therapy early next week to start working on her posture, eye movements, and hand-eye coordination. They are also considering speech therapy, as she gets very shaky and frustrated when she can't find the right word, and is still substituting letters and mixing up words in sentences. They are also talking about putting in a PICC line, which they will do today or tomorrow if any of the genetic tests of her spinal fluid come back positive.
Amelia has sat up for quite some time today. She is still arching her back somewhat, and as you can see in this photo, her eyes don't track quite right nor are all of her facial expressions symmetric. However, things seem to be going in the right direction for now. Her antibiotics have been restarted because there is still uncertainty about the source of the infection. Haemophilus B influenza and one other common bacteria latex assays (rapid screening tests) came back negative in her spinal fluid. Her spinal fluid is showing no neutrophils now (markers of bacterial infection); neutrophils were present in her previous spinal tap from Tuesday. However, there are more cells indicating viral infection now than there were then. There is some question whether they have effectively been treating the bacterial infection, and the viral infection is just now becoming more apparent and more aggressive as there is less competition for nutrients. Two of the three teams of doctors feel her improvements are from the lowering of her intracranial pressure (pressure around the brain) due to the drawing off of some excess fluid during the spinal tap. They are hopeful that the antiviral medications will begin to lower the inflammation in her brain by the time the fluid has time to build up again (2-3 days). Unfortunately, that means we won't know for 2-3 days whether her improvements are "actual" improvements, or just related to the spinal tap and therefore temporary. We'll take what we can get! A kid who can smile, talk and sit is a far cry from one in a stupor, lying flat on a bed!
Here's a picture of what motivated Amelia to sit up in bed this morning! She got some much-longed-for visitors for the kids Halloween party on the pediatric unit today. Katy is dressed as Robin Hood, Rosy is Maid Marian, and Caleb is Friar Tuck. As you can see, Amy is a bee - I'm not sure how that fits their theme, but the kids have it worked out somehow! The girls were pretty pleased to see their sister sitting up in bed smiling at them, as you can see by the ecstasy in their faces!
We are so grateful for this reprieve. Please pray that the antiviral medications will kick in quickly and we will see real improvements starting next week. Amelia will begin physical and occupational therapy early next week to start working on her posture, eye movements, and hand-eye coordination. They are also considering speech therapy, as she gets very shaky and frustrated when she can't find the right word, and is still substituting letters and mixing up words in sentences. They are also talking about putting in a PICC line, which they will do today or tomorrow if any of the genetic tests of her spinal fluid come back positive.
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