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This is Lexi's Story
Looking back at the pictures from Lexi’s 6th birthday party, I am reminded that she was not quite herself that day. She had been complaining of a stomach ache. Like any youngster she had overindulged on birthday cake and compounded that with running around, I assumed this combination was the cause of her complaints.
A few days later however, she woke up nauseous and vomiting. The vomiting persisted. By the time we had made it to the Pediatrician’s office Lexi had become pale, her body limp and lethargic. The Doctor’s diagnosis, was simple, she had the ‘virus that was going around.’ Lexi’s grandmother, a registered nurse, was not satisfied with this assessment and insisted that we take Lexi to the Emergency Room.
The ER team reiterated my mother’s concerns however they felt the dehydration was due to a serious case of the flu. Following a succession of IV fluids, we went home. I was feeling unsettled. My gut told me that something was not right.
 Based solely on a mother’s intuition, I took her to another hospital. Within an hour of walking through the ER doors we were being whisked in an ambulance to Vanderbilt Children’s Hospital. When we arrived Lexi was disoriented to such a degree we thought she was having a seizure. After what felt like hours, what seemed like twenty doctors and countless tests, the conclusion was that Lexi had Nephrotic Syndrome.
We spent that night in the hospital. The next morning, Lexi could barely walk. Her right foot was lifeless and dragged along the floor. When I called out for help the nursing team rushed Lexi out to perform some additional tests.
The results of her MRI were daunting. The doctors informed us that Lexi had suffered a stroke in her sleep. The Nephrotic Syndrome combined with severe dehydration caused a blod clot that had traveled to Lexi’s brain through an ASD, or what was explained to me as a hole in her heart.
Less than two months after Lexi had fully recovered from the stroke and had been released from the hospital, she suffered a relapse. The biopsy showed that Lexi has FSGS. So, now we wait. We wait for Lexi’s steroid regiment to conclude; we wait for Lexi to be strong enough to endure open heart surgery; and, we wait for a cure.
As a mother, I would like so much to find other families in Tennessee who are going through the same things. I think it would help Lexi to know that other children are just like her.
To contact Angelina, please email des2801@aol.com.
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