Blakelyn’s Story

Age 17 months

October 2023

Location : Tennessee

Source:  Unknown

Infection: Shiga toxin-producing E.coli (STEC)

Disease: Hemolytic Uremic Syndrome (HUS)

Days Hospitalized: 44

Days of Dialysis: 30

Blakelyn was 17 months old when she became ill.  In October of 2023, she had diarrhea multiple times during the day and even in the middle of the night when she was sleeping.  On October 13th, we took her to the pediatrician who informed us a bad stomach bug was going around that was lasting around two weeks. We went back home.  

On October 22nd, Blakelyn was taken to the children’s hospital in Johnson City and we were told the same thing about the bad stomach bug, but this time they sent us home with a bag to take a poop sample. Not knowing what else to do, I gave her a probiotic and this seemed to help with the diarrhea. 


On October 31st, Blakelyn was admitted to children’s in Johnson City.  She had spent the day with her grandmother. 
She continued to have severe diarrhea and had developed a fever. That evening she started vomiting uncontrollably. 

On November 2nd, she was moved to a children’s hospital in Knoxville. Her kidney function was declining and the hospital in Johnson City did not have a pediatric neurologist.  The next day, November 3rd, Blakelyn was officially diagnosed with Hemolytic Uremic Syndrome (HUS).  They put a central line in her leg for medications and port in her neck and started dialysis that evening.  She received dialysis over a 30 day period. 
 
Blakelyn spent a total of 42 days in the hospital.  She was released on December 9th, but we came back the next day due to excessive vomiting.  It could have been from one of the medications, clonidine, she was weaned from and she also did have a
stomach bug. She stayed two more nights and then on December 12
th, she came home, and stayed home. 

Once back home, Blakelyn took 3 days to wean off Risperidone and Clonidine.  She continues to take Enalapril,
an ace inhibitor, to treat stage 3 kidney disease.  The HUS caused permanent damage to her kidneys. 

To this day, we do not know the source that caused her STEC infection which led to developing Hemolytic Uremic Syndrome.  The long hospital stay was traumatic for all of us.  Blakelyn had issues with sleeping for some time and she still has a post traumatic emotional reaction when we go to Knoxville for her follow-up appointments with the neurologist.