Just a quick update. Mikaela has been home the past week with a tutor keeping her up to date with her school work. We were going to try and have her go to school this week for NECAP testing but she has been VERY tired and up most the night so she wasn't able to make it yesterday for the 2hr session and she was not feeling up to working with her tutor. She tried to stay awake yesterday afternoon so she could get a good night sleep last night and be ready for school today-TOTAL opposite happened and she had a horrible night. Up ALL night and acting very confused, disoriented and saying things that didn't make any sense several times throughout the night. I called her specialist this morning and she wanted to see her, as soon as she did, she admitted her for more testing. Right now, Mikey and I are in the waiting room while she is getting an MRI and LP (lumbar puncture-aka spinal tap). They are checking for meningitis! If they notice anything too out of the ordinary, they are going to send her to the PICU for more observation. She also had blood cultures and lab work done to see where her numbers are-too much ammonia and other things can also cause this type of behavior. (And I was thinking it was lack of sleep and all the things running through her young mind! - who knew!). Thank goodness the VNA didn't pull the PICC line yesterday when she came to do labs at the house.
On another note (kind of) we do have an appointment at CHP with the kidney transplant team on Wednesday,
October 20th. Hope they list her for a kidney and then she doesn't have to wait too long. Poor thing goes through sooo much for a 13yr old. It is time for some quality of life back. :)
Will keep ya posted.
PS-her newly pierced ears better NOT close up since I had to take out her earrings once she was aleep for her MRI...that just might be the limit! :)
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