Krew’s family is currently waiting on results from a 700 EXOME genetic chromosom panel metabolic testing. These results are expected to be completed May-June 2023. There is currently NO TRUE diagnosis. Treatment has been aimed towards mitochondrial disease with regressive Encephalopathy. Currently Krew cannot sit up, walk, stand or eat on his own. He has a Naso-gastric feeding tube in place to eat and will be have surgury done 3/27 or 3/28 for G tube. He does not currently show any signs of recognizing the presence of his family. He struggles to focus on his family or any objects in front of him for more than a few seconds at a time. He appears very disconnected and only exhibits non-purposeful and unintentional movements. Krew currently requires 24/7 care.

On 3/22/23, Krew’s family was informed that he will be discharged home. They are not able to transfer him due to his stable status. His family was told that other hospitals will not accept him as a transfer, due to the amount of all medical protocols that heave already been performed. The family will now be trained to set up his feedings and educated them regarding his medication schedule and administration. He was discharged April 4th for home care.

All new consults or visits will now be denied by insurance and billed to the family.