I haven't updated the last few days because, quite frankly, things were changing on an hourly basis.
KJ has been to ER twice this week at two different hospitals for the 103 temp that will not end and now she has begun having THE HEADACHE again with peripheral vision loss on one side. Her GP told her yesterday that her optic nerve is swollen and there is a problem with her shunt and she sent her to the local hospital to be admitted.
KJ now has reached a new status with having the shunt...she can't have a lumbar puncture done unless it is done by a neurosurgeon because an untrained person could accidently puncture the shunt and that just opens up a whole plethera of other problems.
They do not have a neurosurgeon in Southern Illinois so they wanted to transfer her via ambulance back up to St. Elizabeth's where we live where her surgery was done, etc.
That was the plan.
They finally got ahold of the neurosurgeon up here who did the surgery who said he didn't come into the hospital on weekends and she could call him on Monday.
So she was discharged from the ER in massive pain and noone did anything. In recap, Friday evening was spent telling her by the ER staff that she needed to be shipped out to another hospital and brought out all the scary words that make you shake to the core of your being. She got herself psyched for all of this that has hit her in the face in a matter of hours only to have them say, "Whoops....change in programming. The situation you have been told that is going to happen has been jerked from the channel. Good bye, good luck and God bless." Talk about being kicked to the curb. All I could do was try and comfort her over the phone while her world was once again falling apart.
I had her dad pick her up and take her to his house. She's going to call me when she wakes up and we're going to come up with a plan. I will either go and get her today or Sunday, bring her up here and start the St. Elizabeth Dance all over again.
She is really getting tired of all of this. She thought she was on her way back to a life. I'm hoping even though they said the shunt has moved 1 cm(and gotta tell you, I'm not trusting the accuracy of that report from Southern Illinois, because, golly gee, they've probably never seen a spinal shunt before and without the original films they don't know if it has moved or not) there will be something that can be done besides going back to surgery and redoing it all.
In Monday morning quarterback style, my biggest mistake was not going to get her Monday when she got sick and get her back up here to one of her docs. But it was *just* a fever. She had no headache. She had a cough. I was going with virus or bad cold. I somehow in my infinite wisdom did not associate that with shunt problem. So I'm kicking my butt up and down the steps today.
So there you have it. The saga rolls.
Please keep KJ in your thoughts and prayers. Things have got to get better for this child.
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