Willow's Journey to Healing

Willow is a medically complex 16-year-old. As a toddler, she spent much of her time inpatient at Children's Hospital. Her team of doctors worked diligently to help her learn to live with Dysautonomia, neurogenic bowel, and neurogenic bladder. We had a few years where she was "well treated," which is to say, Willow has had to do meds, treatments, and a special diet, but she has been okay. This past year, her health has plummeted, first with a new diagnosis of juvenile psoriatic arthritis that has been difficult to treat. Since September, each condition has worsened drastically. We have changed treatments, switched up the meds and the timing, and met with all of her team here in Oklahoma. Unfortunately, during this last hospital stay, Willow's issues have become more complex than Children's GI can manage. Her digestive system is not working, and she needs to be admitted out of state for a higher level of care. She has been NG tube dependent for over 90% of her nutrition and hydration for the last couple of weeks. However, without the rest of the digestive system waking up, we are not able to do full feeds with the NG tube.

This week, we will travel 12 hours to a larger children's hospital network. Wes and I will be with her. I will have to be off work so that we can seek care for Willow. Currently, we are not sure how long we will be there, but we are anticipating at least a week in the hospital. I work for the state and our insurance will not cover any of the neurogastroenterology groups. We will be paying out of pocket for all of this stay. Not seeking care outside of Oklahoma will be life threatening for Willow.

Thank you for your prayers and assistance.