They sent us home. Her headache continued. After a few more days she began throwing up. We took her back to the ER and this time insisted on an MRI and the doctors found a grape-sized blood clot at the base of her skull. Because the blockage is putting pressure on her brain, skull, spinal cord, and back, she was put on blood thinners and medicine to reduce the amount of spinal fluid that the human body produces. She has had 3 spinal taps to drain her spinal fluid in the past week. She has had a craniotomy during which the doctors were unable to remove the clot. She has been in the hospital for 3 weeks in pain with double vision, just treating symptoms while we wait to find a rare specialist that can treat this particular kind of clot.
A blood clot in an otherwise healthy person is extremely rare, and the doctors have no answer as to why she has a blood clot. She doesn't have many treatment options. This is VERY dire, and in fact, the clot is so thick and organized and in such an unusual location that they can't remove it but can only hope to compress it enough to improve her bloodflow; not restore it to the levels of a normal healthy person. She will be on blood thinners for an indefinite time.
We have health insurance, but even with our coverage, the out-of-pocket maximum is still $12000 per year. With all the specialists treating her and the hospital stay our family is absolutely going to hit this threshold, not to mention the time off of work, paying for babysitters for our other children, and gas to drive back and forth from Queen Creek to Phoenix Children's Hospital. Her medication alone costs $1200 for 6 weeks and it is the generic blood thinner.
We have a regular family with an average income and the cost is crippling for us. Anything anyone can donate is absolutely appreciated and we will pay-it-forward as soon as we can. Thank you and please keep our family and daughter Carys in your thoughts and prayers as this is truly a life or death situation.
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