Help Spiderbiteradio aid these children

On the eve of our daughter’s 5th birthday, our otherwise healthy daughter was afflicted with a sever on set of Miller-Fisher, a variant of Guillian Barre Syndrome.

Lisa woke on the morning of October 17th with a low grade fever and was feeling fatigued. By late morning her vice had changed, with slurred speech. She was spitting out her own saliva because she could not swallow. In retrospect, she was experiencing descending paralysis, but of course we didn’t know that at the time.

We took Lisa to the emergency room at Elliot Hospital , Manchester NH . While in the waiting room her breathing became more difficult. I expressed my concern and a staff member took Lisa to an examination room.

A nurse tested her blood oxygen level. Suddenly, another nurse entered the room. He picked Lisa up and ran with her. He shouted I have a critical 4 year old. I almost passed out. The nurse who preformed the blood oxygen text explained that Lisa’s blood oxygen level was only at 80%, which is extremely dangerous.

Lisa was moved to an emergency trauma treatment room. There they tried to stabilize her breathing. Despite all their efforts they were unable to help her. At that point the decision was to intubate her. Once intubated Lisa was air lifted to D.H.M.C. in Hanover , NH .

Lisa was admitted to D.H.M.C. pediatrics’ intensive care unit. Unknown to us this would become our home for the next two months. D.H.M.C. sees approximately 10 Guillian Barre/ Miller-Fischer syndromes per year. They have the most wonderful staff along with the smartest doctors. We became a great family.

The doctors ran a multitude of tests, but could not figure out what was wrong. By the next day Lisa was paralyzed from head to toe.

By day 4 they had narrowed the differential diagnosis to; Guiilian Barre Syndrome, Miller-Fischer or botulism. By the weeks end the diagnosis for Miller-Fischer was confirmed.

At this point Lisa had been intubated and had a feeding tube placed. She was sedated with Fentanyl, Versed, Ativan and Morphine. These drugs were used for paing and to have amnesia affect on her. With Lisa being so young the doctors knew she would not be able to mentally handle what was happening to her, hence the amnesia medication.