Diary of a Crisis, Part 1: We are Prepared for the Worst
Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part 1 of her story appears here today.
By Lee Vanderloop
What would you think of a parent that, rather than ask for God’s hand in healing their child, instead prayed that He take that child from this world? Who can imagine, let alone understand, a parent experiencing such deep anguish and desperation that they want their child free of the suffering, even if it means losing them? This is where our family was with a recent medical emergency involving our daughter, Danielle; 27 years old and suffering from severe spastic quad cerebral palsy.
Our nightmare began with the nurse awakening me, alarmed that in the past hour Danielle’s respiratory rate had more than tripled, and her resting heart rate had doubled. We immediately awoke Danielle’s adult siblings, informing them of their sister’s condition and, as always, reminding them of the possibility that she may not come home again.
We prepared for our departure to the hospital, and an ambulance took Danielle there. In the ER, after x-rays, she was diagnosed with double aspiration pneumonia. This episode was especially troubling to me. It was unlike any of the previous four pneumonia episodes Danielle had experienced. With this respiratory complication, Danielle was not showing any respiratory symptoms we were familiar with. I was puzzled by the difference.
We Review Our Options
The doctors said our timely response caught the pneumonia before it could produce severe symptoms. After talking with the physicians we decided that no extreme measures would be taken. There would be no Bi-Pap, intubation, CPR or respirator should Danielle’s system further fail her. Our only approach would be IV antibiotics.
We have maintained a DNR on Danielle for years. The creation and signing of a DNR is far easier to do when the prognosis is positive than it is to request enforcement of it when conditions look less than favorable.
After much tearful family discussion, my husband, Danielle’s siblings and I agreed to enforce the DNR. We knew that to keep Danielle in our world any longer would be cruel and selfish. We had no right to ask her to endure further suffering as a result of our decision. If the time was to come, we would set her free of the body that has imprisoned her spirit all her life—a body that for her entire existence offered nothing but pain and suffering.
Sadly Danielle has passed away, but her mother Lee Vanderloop is helping other families daily as editor for the CP Family Network website.