Joseph contracted a rare condition called Hemolytic Uremic Syndrome that doctors believe was triggered by an E. coli infection, even though he tested negative for E. coli in the emergency room. He became ill with nausea, bloody diarrhea, and was generally not feeling well. He would not eat and getting him to drink anything was a challenge. After 36 hours, we took him to the ER and all of his bloodwork was normal so he was diagnosed with a GI virus. He continued to decline and after a visit with his pediatrician 3 days later, Joseph was sent back to the ER at which time the tests were run again. This time, he was in full blown kidney failure, liver distress and his blood numbers were severely out of whack. HUS (Hemolytic Uremic Syndrome) was the diagnosis. He was placed under contact precaution, moved to the PICU and scheduled for surgery to insert a peritoneal catheter for dialysis.
Five days later, his catheter stopped working and he had to have surgery again to remove a blockage. Doctors inserted a catheter in the neck to do dialysis since he was continuing to decline. He spent 25 days in the hospital and had 15 blood transfusions. At one point, his platelet count was so low that he started having a nosebleed that wouldn't stop and ENT had to get involved to plug the nose. He was seen by cardiology for long QT syndrome which they believe were caused by the catheter in his neck shifting too low (due to weight loss) so that catheter had to be removed. He was also on IV nutrition and was vomiting daily the entire time he was in the hospital.
He is our hero and a walking miracle! Nephrology told us he would likely need dialysis for some time after his release from the hospital, but he walked out of the hospital without dialysis and hasn't needed it since! He was on high blood pressure medication for several months, but was recently weaned from that. We are so grateful for the nephrology team at Children's and his wonderful pediatrician and care team, not to mention the thousands of powerful prayer warriors who got us through this difficult time. Today, Joseph is thriving, has gained all his weight back and you wouldn't know we almost lost him.
Pamela is a parent mentor for these conditions: E. Coli Infections, Hemolytic Uremic Syndrome.
Pamela is a mentor for these care services: Adoption, Cardiology, Developmental Delay, Feeding and Nutrition, Nephrology, Neurology, Surgery
