A very sleepy day

I do not have a whole lot to write about today. This picture was one of the few moments her eyes were open. As you can see, she isn't making very good eye contact today. The good news is that we had a negative blood culture which shows that we are getting a handle on the infection. The other good thing is that she has been able to rest well today. She has had a rougher day than yesterday though in the fact that she is very agitated and frustrated about her body being out of her control. She also seems to be in pain when she is awake, but most of the day she has slept. Her little body is so weak...she just cries when I hold her in a sitting position so we will be starting PT and OT tomorrow. Please keep Keyan in your thoughts as she starts the therapies because while they will be good for her physically, it will also cause her a lot of discomfort and stress.

The neurologist was in today and was able to really see her body in action and thinks that we may be dealing with tics. He asked if she had any symptoms of obsessive compulsive disorder, even mild ones, and I laughed right out loud. If you know Keyan, it is her little quirks that make her so endearing! He feels that the files of Keyans brain were dumped out during the seizure and it will take awhile to get them filed back in the correct spot...along with that being that some things may not be filed correctly again, but only time will tell. We have agreed to trying a new medication that is very effective in controlling tics but it will take some time to know if it is working. The hardest part is that she is aware of her body doing things she is not leading and it is very scary for her. Overall, it is a good thing that she has slept most of the day.

The other piece to all of this is the psychiatrist really feels that she is suffering from a post traumatic stress disorder (between you and me, I probably am too!). She is going to see Keyan while we are here at the hospital and see if we can get some of Keyan's anxiety under control. It is a very common thing in kids who are chronically ill and I am so glad the psychiatrist is part of the team.

We have almost made it thru the weekend and that is a good thing. Monday will bring all the doctors back, new plans, new ideas, and hopefully some further understanding of what her brain is going thru. The biggest piece to her healing is just time and that is a hard pill for me to swallow.