Wednesday, August 1, 2012

Diary of a Crisis, Part 4: An Unexpected Birthday Gift

Diary of a Crisis, Part 4: An Unexpected Birthday Gift

Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part IV of her story appears here today.
By Lee Vanderloop
Our birthday guests began arriving shortly after my return to Danielle’s hospital room. As we were organizing, a physician from Hematology appeared in the doorway. I excused myself from the task at hand and met him at the door.
He asked me “How’s your day going?” I almost couldn’t believe what I was hearing. I looked at him and said, “Everyone is telling me that my daughter is probably dying and some bacteria or infection attacking her bone marrow, how do you think my day is going?”
He reacted immediately, asking me who was telling me that my daughter was dying. I repeated to him the diagnosis of pancytopenia that I received from Infectious Disease, general medicine and others. He told me he was going to speak with his boss, Danielle’s physician in Hematology, and would return later. I expressed my desire to take Danielle home. He said he would get me an answer. We cut Danielle’s birthday cake and watched her sleep through her 27th birthday party. She’s slept through more of her parties then she’s attended through the years.

Cake and an Unexpected Gift
We indulged ourselves in chocolate cake with truffles and chocolate icing, and a sugar rush that would last into the next day. I walked out with everyone as they left. When I got back to the room, I found a note from Danielle’s physicians from hematology that they had visited and would return. I wasn’t back in the room moments before they appeared.
Dr. Brown greeted me and introduced herself (It was Dr. Brown’s associate who had asked me how my day was going!). She began by assuring me that Danielle was in no danger of dying in the immediate future and that her immune system, although severely compromised and weakened, was not crashing. She didn’t believe a bacteria or infection was ravishing Danielle’s bone marrow. In her opinion, she said, multiple viral, bacterial and surgical events had taxed Danielle’s immune system to the point that she had developed Acquired Pancytopenia, and it was not critical.
She noted Danielle’s respiratory status was stable, with the IV antibiotic resolving the aspiration pneumonia. She was the one who told me that CT scan comparisons showed one of Danielle’s lungs had collapsed at some point in the last nine months, but that Danielle was functioning fine on the one.
Our surprise birthday present that day was that Danielle would end her 27th birthday back in her own home in her own bed! Dr. Brown wrote the discharge orders at 9:00 pm and we had our angel back in her own bed by midnight.

My Work as a “Researcher” Continues
As comforting as the diagnosis Hematology was, I’m not in total agreement with it. But of course, I’m MOM and I’m a researcher and YES I’ve done my research on Danielle’s latest hematology issues. That’s what researchers do…we research!
As it turns out there could be another more viable explanation. It seems that what Danielle was experiencing with the diagnosis of acquired pancytopenia is becoming a commonly known complication of long-term jejunem feeds, as well as gastric bypass and Roux-en-Y jejunum surgeries. In my research, I’ve encountered multiple studies and evidence that these surgeries result in malabsorption issues for many patients. One such study makes a direct link between copper deficiencies resulting in pancytopenia. It’s become almost obvious to me that the jejunem is not designed to absorb many important nutrients which by nature would normally be absorbed in the stomach and upper intestinal tract.
Even more ironic is that a day after researching this material I received a call from Danielle’s physician stating that additional labs had come in showing that Danielle’s copper levels are extremely deficient. Wow, what do you know! This makes me hopeful that it can be resolved with copper supplements. It could take months, but my diagnosis, as MOM, is that this immune system deficiency is due to the Roux-en-Y and its inability to absorb valuable micro nutrients. Stay tuned as we rebuild Danielle’s immune system!

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

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