A month ago Corey was a completely healthy, vibrant, full-of-life, energetic, little boy. He got sick. Had a high fever. Had a seizure. Had lots of meds pumped in him. Was hooked up to a ventilator. Was diagnosed with viral encephalitis. Had a good report. Was undiagnosed when he wasn't getting any better. Then there were thoughts he had a Mitochondrial Disease. Tests were run. Specific types of Mito came back negative. Had more seizures. Had EEG leads hooked up for constant observation. Had an NG tube placed. Had a central line placed. Had more seizures. Had MRI's to asses damage. Had a pheno induced coma to stop seizures. Had more seizures. Had tons of Dr.'s with tons of opinions and more medication. And so on.
They are still at a loss as to why this happened. But seizures cause damage. The damage causes more seizures. The brain tissue dies. Fluid forms in its place. And all of a sudden a totally healthy beautiful 3 year old is given a grave outlook. Dr.'s evaluate and report the worst outcome. Now a family with a totally healthy 3 year old boy is faced making decisions based on quality of life, a possible ""vegetative" state, facing a trach, g-button, limited mobility, lifelong disabilities.
Corey is very dear to one of my best friends Liz (pictured above.) It has been an extremely emotional few days, and I ask for all of you to lift up this family in your prayers. We are praying for a miracle at this point. Corey is a fighter. He can prove the Dr.'s wrong. We all know kids are way more resilient than we can comprehend. Most of us have seen or heard of MRI's that don't match the child, and children who don't match their MRI's. Physical Therapists always seem to have a more hopeful approach (and sensitive way to deliver it)than the Dr.'s.
As a "last resort" they are putting him on the Ketogenic Diet. This has worked a miracle for my daughter, so I pray it does the same for Corey.
A COMPLETELY healthy 3 year old is now on his 5th week in the ICU at Cook Children's Hospital. Why does this happen? It is heartbreaking.
This week, I tried to see his future
4 hours ago