Help Sweet Avery & the Rapp Family

Avery came to the hospital on 9/25 with a fever, extreme fatigue and stiffness. Upon immediate concern and tests and imaging, it was revealed she had a virus to which her body had an over the top autoimmune response resulting in swelling and injury to her brain, seizures, and unconsciousness. She was sedated for several days but has since not been on sedation in hopes of her waking up. She was placed in a neuro protection period for the first couple weeks to keep the parameters of her vitals as tight as possible to keep her brain safe. She had pressure build up from the swelling in her brain and so there was a drain surgically placed in her brain to help offload the pressure. She still has swelling but they were able to take the drain out since her ventricles have stayed small enough for her to drain her spinal fluid on her own.

Avery is still at Children's. We moved out of the PICU onto a general medicine floor as she's considered stable now. She went into surgery a couple of weeks ago for a GJ feeding tube and a tracheostomy for a more permanent and stable solution to her being unable to keep her airway open. She is still connected to the ventilator, but rather than being intubated, it is now connected directly to her trach. It's so wonderful to be able to see her face without tubes and tape covering it. She is breathing over the ventilator settings so the team is hopeful that she will eventually be able to only be on the ventilator at nighttime and get by with just the trach for airway support during the day. She's weaning off some pretty heavy-duty main medications. Avery has started to move around quite a bit which is so nice to see. However, the movements do not seem to be intentional and more uncontrolled due to the injury. She is struggling to control basic functions like body temperature control, blood pressures, secretion management, pupil dilation and airway tone. She still hasn't opened her eyes, and there's no way of knowing if she will regain the capability to do so. We do know that if/when she does wake up, she won't be the same little girl she was when this all happened. We're just hoping like heck she opens her sweet eyes and recovers in the best way she can. We’ve been reminded a lot that brain injuries are a long and slow process but that babies brains are pretty incredible with how they can recover.

Funds will help cover the burden of medical costs, gas for commuting between home and hospital every day, and home bills while on unpaid leave.