the story of the hospital to friends who didn't know (and Acute disseminated encephalomyelitis)

PICU rooms at Texas Children’s Hospital have windows. It was the same people outside everyday.

“it was intense”

it was intense. It was unreal. but she talks now. she is awake. these are all things we hoped for. she smiles. every day there was a change, I said to myself, if this is it, this is enough. so every day was a little better than before.

“it was the worst”

it was the worst. It was the nightmare parents have. I didn’t want to sleep. I was alone. memories have been lost. we're going to create new ones. Time stopped. There was nothing but that time and those days and weeks. They are still being replayed. Still watching in agony the monitors and the morning rounds and the countless questions by different teams of drs and the tests. the plasma. the seizures. the spinal fluid that was lost from one hospital to the other. the absurd questions. the cat scans and deep brain scans and “look this is where her brain has a bleed” and the ekgs and the pictures of her big heart surrounded by fluid.

“she’s regaining some memories.”

Silly in March

the ants that appeared in her bed while still in a coma. and we didn’t catch them. then when semi-comatose the ants came back and a paranoia of ants and insects and doctors begins. vampire doctors and doctors wanting to take her family away. Doctors stealing her blood. Imaginary food. the same questions posed to her every day: what’s your name? do you know where you are? how old are you? for weeks she didn’t know. we practiced and practiced. memory games. mind games. you know this you know this. don’t cry. don’t cry. “I know I know this”


What is acute disseminated encephalomyelitis?

ADEM is an “autoimmune” condition that often occurs after a child has an infection, such as a cold. The immune system protects the body from invaders, like bacteria and viruses.

Autoimmune diseases confuse the body’s immune system. Instead of fighting against bacteria or viruses, it attacks healthy cells and tissues.

In ADEM, the immune system reacts against the brain and spinal cord. Autoimmunity is not contagious, but may be genetic (inherited from parents).

Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but intense attack of inflammation in the brain and spinal cord that damages myelin — the protective covering of nerve fibers.

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