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. 

http://www.cpfamilynetwork.org/ 

Diary of a Crisis, Part 2: Shock and Outrage

Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part II of her story appears here today.

By Lee Vanderloop

Hematology, immunology, infectious disease, epidemiology, pancytopenia, and bone marrow biopsy were several of the medical terms we encountered during that frightening week of hospitalizations. In my 27 years of caring for our daughter, I have had lots of experience in a number of “ologies;” namely gastroenterology, pulmonology and neurology, but it seemed we were now destined to experience additional disciplines of medicine that we had not yet encountered.

Danielle’s initial diagnosis was double aspiration pneumonia. It has been my experience that few, if any, x-ray physicians or technician have ever been able to interpret Danielle’s chest x-rays accurately due to her severe scoliosis and history of respiratory issues. The doctor this time, however, was confident in making his diagnosis. We would learn almost a week and a CT scan later that something significant had been overlooked; Danielle’s left lung had collapsed at least nine months earlier.

But more complications arose. About five days into the admission, a physician from Infectious Disease walked into Danielle’s room, shaking his head back and forth. He said the antibiotics weren’t working. I was confused. It appeared from Danielle’s improved respiratory status and almost perfect oxygen saturation levels that the pneumonia was responding nicely to the antibiotics. But the doctor said a review of her hematology lab results showed a virus or bacteria was now attacking Danielle’s bone marrow and was not responding to the antibiotics.

Bad Prognosis and Outrage

He talked about a dramatic drop in Danielle’s platelets and other diminishing values as he escorted me to the computer and pulled up the results of Danielle’s recent lab work. He quickly scanned through the lab results, but all I could see were several red lines running horizontally across the pages. He asked if Danielle was a “do not intubate” and when I told him that she was, he simply shrugged and walked away! I guess I was to take that as, “We can’t do anything further for her, Mom!”

I was angry and shocked by his insensitive approach and method of communication, and I let everyone know it! His demeanor was unacceptable. I voiced my outrage and disbelief to the next round of doctors that came through. I was told they would talk with the physician who made the diagnosis and get everything clarified for me. At that point, I was so outraged and angry by the presentation of this diagnosis that I couldn’t even grasp the meaning of it. BONE MARROW was echoing through my mind like a mantra, over and over.

In my shock at the physician’s behavior I hadn’t begun to process the implications of this new diagnosis. I had more questions than answers and I was determined to get answers. I communicated my desire to have Danielle transferred to another hospital where they had years of her records on file from multiple surgeries, pneumonia bouts and other medical events. The transfer occurred the morning after my request was made.

Sadly Danielle has passed away, but her mother Lee Vanderloop is helping other families daily as editor for the CP Family Network website. 

http://www.cpfamilynetwork.org/