During the seven years since Tina’s crisis, we have had an additional few hospitalizations, generally for a week each, and generally associated with an infection of some kind. Respiratory infections are the most dangerous, but urinary tract infections can also become systemic and life-threatening.
If the infective agent is a virus, not much can be done to fight it except to support the patient as her immune system battles to save her life. Combating secondary bacterial infection is often required, too. A bacterial pathogen is likely to be susceptible to antibiotic treatment. A mild broad-spectrum antibiotic might suffice, though often one needs a stronger drug tailored to the specific type of organism, Gram-negative or Gram-positive, staphylococcus or pseudomonas, etc. Medicine that can be given orally (by gastric tube, in Tina’s case) is more easily administered than medicine that needs to be given intravenously. In Tina’s case, several such IV treatments have left her arm and foot veins too fragile. That’s why a chest-level port will be needed.
When she is hospitalized, we have our own nurses accompany her, doing as little or as much as the hospital staff is comfortable with. This is expensive, as our insurance does not cover this second layer of nurses; but it assures that her special needs are understood and receive attention. It provides continuity of care for her and continuity of employment for the nurses.
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