January 13 & 14, 2011
A Gallium Scan was ordered to determine the source of William's infection and/or inflammation that would be causing such dramatic febrile episodes. The test was days in the making, or shall I phrase it days in the decision-making process by all the docs involved in William's care.
A Gallium Scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body. For this test, William was injected with a radioactive isotope tracer (gallium-67) on Wednesday through his central line. The tracer was absorbed in his body's tissues, bones, liver, intestines, organs and glands where inflammation or a buildup of white blood cells is present. After waiting a day for the absorption to occur, William was placed under general anesthesia for two hours in the scan machine. On Friday, after two days of absorption time, the test was repeated for another hour and a half of scanning.
Areas where the tracer builds up in higher-than-normal amounts show up as bright or "hot" spots in the pictures. The problem areas may be caused by infection, certain inflammatory diseases, or a tumor.
Being put under general anesthesia has become a routine part of William's life....unfortunately. After many difficult and traumatic experiences of being put under and problems with waking, I've taken an advocacy role in telling the anesthesiologists how we run being put under. We no longer to Versed...I refuse gas...we do it one way....and one way is the only acceptable way. I go to the location where William is going to be put under (sometimes an OR, in this case right at the scan machine), I hold him, they inject him with Propofol, he falls asleep, I lay him down, give him a kiss, tell the team to take good care of him and quietly leave the room. Its the only way that works for us....and I have to say, its been working well for months now.
Seeing all the "caution: radiation" signs on the doors of the room where I just left my baby puts the whole scenario into perspective.
Here is just one of the 287 images from William's Gallium Study. I have to say, its rather freaky to see these images. It reminds me of an alien laying there....not my beautiful son. if only this entire experience was being perfromed on an alien...instead of our William.
In the end, the 3 1/2 hours of scanning under anesthesia, over a 2 day period was found to be negative/normal....and did not give us any more insight into a cause... except for the fact that William did not have an obvious infection or area of inflammation at the time of the scan. I only feel it necessary to share that this test was done after William had been on Zosyn (a broad-spectrum antibiotic) for a week and a half, Vancomycin (the infamous "drug of last resort") for 5 days, an antifungal for 3 days and over a week of anti-inflammatory meds. I guess we will never know if the source of infection/inflammation had improved with the treatment prior to the test, if there was never a source of infection/inflammation or if the test was even a waste of radiation exposure, time under anesthesia, additional trauma to poor William, unnecessary cost to our insurance companies...and a whole lot of stress for all of us with care so deeply for William.
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