When we first arrived at Children's hospital we learned our little girl was very sick, she might even have leukemia.
Fast forward a few days...sepsis, infections, contact restrictions, anti-biotics, anti-fungal, pain killers, sedation, platelets, blood, fluids, diuretics, chemo, steroids, asthma meds, benedryl, diapers, iv's, spinal taps, and more.
She would wake momentarily, mostly when they moved her and wildly open her eyes and she would scream SILENTLY. She would mouth the words mama. Or No.
Nauseous was the feeling I would get. We would talk her through it, we would rub her forehead, and we would pray.
Pray for her to go back to sleep or just relax.
Fast forward...she's off the ventilator and off the super strong meds and she has withdrawals. Withdrawals like someone coming off heavy drugs.
She spoke when she first came off the vent. Her little sweet voice so weak and trembly. She even asked Chris to lay with her.
Then she pulled her feeding tube out.
She would scream a little sad growly scream for no. And sometimes stick out her tongue but now she won't even do that. She's pulled the feeding tube out twice. It had to be replaced.
Her spirits are down. She is still on a lot of medication. Her throat probably still hurts. She has no control and no independence, except in speech. She chooses to not speak to anyone right now which is so hard! She has been telling me stories since she was two months old.
Tonight, I will appreciate her resting her voice- for later she will need to sing songs about this traumatic event & spread her lovely stories to the other children of the world.