Milen’s Story

Site created on June 24, 2018

Milen  has been hospitalized since Friday, June 22.  We brought him in to the ER with uncontrolled seizures that were increasing in frequency and duration.  He had been ill and vomiting the 4 days before.   On Friday he  was admitted to the hospital and loaded up with anti-seizure medication, which helped some, but did not completely stop the seizures.  Early Saturday morning, Milen stopped breathing and had to be intubated.  He is now sedated and on a ventilator, and for now the seizures have stopped.

An MRI of his brain showed an increased amount of cerebral spinal fluid.  He has always had hydrocephalus, or extra fluid around his brain, but this was an increase from before, and was causing pressure on the brain tissues and vessels.  The neurosurgeon drilled in and placed an emergency drain to remove the excess fluid.   It is unclear if this increased fluid was causing the seizures, and Milen is undergoing a lot of testing  to find out what's happening.   

We plan to update this page as things happen and hopefully keep everyone up to speed with what is current.  Thanks for reading!  



Newest Update

Saturday, July 7

Journal entry by Bethany Whiteley —

Hopefully this is the last entry I'll make!  

I brought Milen home at about 9:30 this morning.  They were fast with getting him discharged!  I think they knew we were more than ready to go home.  :)

Once home, Jordan gave his head a shave so his hair all matches now. :)  He also got a much-needed scrub in the bathtub.  Once we got through all that, he was all worn out and quite upset, so we let him go to bed.  

We are planning on a relaxing, restful day today. 

Thank you all for your love, prayers, support, and well-wishes!
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