Our oldest son, James, was at Children’s (Scottish Rite) for almost a month at the end of 2009. We cannot begin to explain the quality of care he received under the experienced eyes of many professional doctors and specialists.
In mid November, 2009, James started an antibiotic for a sinus infection and also had the H1N1 shot. About a week later, after he finished the antibiotic, he started having intense abdominal pain. The pain became so severe he refused to eat and could barely walk. We took him to Children’s on Mansell and after nothing showed from a urine test and preliminary blood work, we were sent home. We ended up in the emergency room at Children’s that same night, where they also found nothing after xrays. Our wonderful pediatrician, Dr. Greg Cabrera, took one look at him the next day and sent us right back to Children’s. Except for Thanksgiving night, we were at Children’s for a month during the holidays. Initially, the doctor thought it was appendicitis because the CT scans showed fluid in James’ abdomin and inflammation. James had his appendix removed only to have the pain return once the pain medicine wore off. James started vomiting and got diarrhea. Multiple tests and procedures were performed to determine what was wrong. He had a picc line put in since he hadn’t eaten in many days for nutrition and to administer his medicine. His pain only intensified and it was all centralized in his gut. The pain doctors (thank you!!) tried every med they could to control his pain while he endured tests and procedures to find a diagnosis.
We met almost every specialist in the hospital as we worked together to determine James’ diagnosis. James was ultimately diagnosed with HSP, Henoch-Schonlein Purpura. HSP is a form of blood vessel inflammation or vasculitis and can be triggered by a virus. HSP results in a purplish, raised skin rash, joint inflammation and sometimes cramping in the abdomen. Most children may get an inflamed ankle or knee and with tylenol it goes away. The rash finally presented itself by week two but he never had joint inflammation. Through the multiple tests and procedures James underwent, the staff did their best to keep my husband and I informed and to stay positive. We saw Gastro-Intestinal specialists, Rheumatoid, Infectious Disease, Nephrologists, Oncologists, Pain docs and you name it. Dr. Salmon was our general pediatrician in the hospital and he took a vested interest in James’ case. He communicated with all the specialists and kept them informed of his daily status. Dr Jeff Lewis, with GI Care for Kids, was the GI doctor on the case. He would save us for his last rounds because he knew we would have lots of questions for him and he answered them to the best of his ability. He might have been tired and want to get home to his family, but he only showed us compassion and a determination to get to the bottom of James’ illness.
Once the biopsy came back that confirmed HSP, the doctors were able to put him on a high dose of steroids and he eventually got off his other medicine and was able to eat. Once he came home, he remained on steroids for several months which made him bloated and his face puffy. A liver biopsy showed no long term damage had been done to his liver. I cannot begin to thank all our friends and family for their support that pulled us through this difficult time in our lives. Now, James is a healthy 8 year old and you would never know that a year ago he was recovering from a long stay in the hospital.
The Nurses are amazing and so caring, but Children’s also has people who volunteer called Child Life Specialists. They visit and spend time with the children and bring them gifts donated to the hospital. These are amazing women who make such a difference. The kids are in pain, scared and not happy to be in the hospital. These women make their rounds with a smile on their face and try to do something special to cheer the children up.
The Zone at Children’s is another amazing accomplishment. Sponsored by the Garth Brooks Teammates for Kids, Troy Aikman Foundation, NHL and National Hockey League Players Association, the Zone is a place to go where the kids can have fun. The children may go to watch a movie, play games or go to a sponsored event. Since James was in the hospital during most of December, he experienced alot of the events during the holidays. James met Atlanta Thrashers, Atlanta Falcons wives, made a gingerbread house and even brought home lots of goodies from Porsche! Since James was unable to go to the Zone based on his health for much of the time, volunteers would bring him the activities to complete in his room or gifts that may have been donated by companies were even brought to his room. AMO held 2 events at The Zone in 2011 and look forward to upcoming date where we hope to bring a smile to the children’s faces.
Our family is grateful to the staff at Children’s and the specialists’ practices that make rounds there for the care they gave our son.
I am honored to be a Mom to Mom blogger for Children’s.