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/