Andrew

Andrew is ten years old. He loves Rubik’s cubes, Lego technics and video games. He loves animals, and his two year old sister is his sidekick. On March 9th, he was sent home from school with what seemed to be a stomach bug. Two days later he seemed to worsen, spiking a fever of 104.2 so I brought him into the ER as precaution. He also has hereditary spherocytosis so fevers are a warning sign. We were sent home with Tylenol and Zofran, and told he had an enlarged spleen, and could be heading into hemolytic crisis..He woke up in the middle of the night in excruciating pain. Collapsed on the floor and couldn’t get up. We ended up back in the ER, where they told me he needed a blood transfusion to help prevent the hemolytic crisis. He was admitted and given the blood transfusion… a few hours later he woke up and couldn’t breathe. We were brought over to their PICU, where they ran many tests, and gave him oxygen. Unfortunately his breathing worsened and he was intubated shortly after that. The following morning I was told that we needed to be transferred to a better hospital because he was in critical condition. He was in respiratory failure along with renal failure. We ended up at Boston Children's Hospital, where they didn’t think he would make it. My husband was away for work and we had to get him an emergency flight home just in case. We were told at BCH that he had a lot of fluid built up in his lungs, surrounding his lungs and heart. Many IVs, a catheter and chest tubes were put in. Many tests were run. Theories were thrown around as to what his diagnosis was… and then we were told they figured it out. HLH was his final diagnosis. He had all of the signs. His ferritin level was over 100,000… all organs were shutting down. He ended up on dialysis, had daily blood and platelet transfusions for a while as well. After many prayers, our baby started to get better. 20+ days in the ICU, we finally moved to a regular floor to spend 30+ more days. Andrew lost mobility in his feet. He developed a foot drop, and now needs AFOs to help his walking. He is on a form of chemotherapy, along with an inflammatory suppressant. They feel he doesn’t need the steroids any longer. His doctors haven’t told us much about this illness. Just that it causes inflammation and could be caused by an autoimmune disease. Tests are still being done weekly to determine what his underlying cause is