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JR Born
JR is the first child born to two married parents near Bozeman, Montana. This is a fairly urban area. Her mother had a healthy pregnancy and there were no complications with the birth. She was born full term. -
Family Structure
There are four girls in the family ages 15 (JR), 12, 9, and 6. Parents are married and mom grew up in the area. Both parents were born into middle-class families and have had no major health problems. None of the other children have had any health concerns. There have not been any major changes in family structure -
Support System
Maternal grandparents live in the area and are very helpful when family is dealing with medical situations for JR. They are both in good health and are able to pick up kids from school, get them to activities and make sure that they are fed and cared for if needed. -
Community
Church is a great source of support for the family; both parents are ministers so they are very active in their parish. The entire family attends mass and all believe that prayer is a very important part of life. They rely on their faith when they are having trying times with JR’s medical situation -
School
The family is very active in the school system. All daughters are in school now, which is very close to their home. They are involved in their children’s education and sports by default since that’s where the majority of their time is spent. There was a note in JR's chart that she went homebound 1 year ago but I forgot to talk to her further about what that meant. I would have discussed her school situation further but she may homeschool. -
JR's Medical History
JR has suffered from chronic constipation since the age of 2 months. Due to this she suffers chronic pain and abdominal distention. JR rates this pain as a 3/10 on a constant basis and reports that her pain can increase to a 7 or 8 of 10 when she gets “backed up.” -
JR's Support
Mom is a very important source of support for JR. The two of them argue sometimes and get on each other’s nerves, but it is apparent how much they care about each other. Mom is worried about her daughter and asks lots of questions which shows how involved she is in her daughter’s care. JR often defers to her mom when asked questions. -
Children's Hospital of Wisconsin
Travel from Montana to Wisconsin for treatment at CHW. Mom and JR flew to WI, and mom is staying at a hotel nearby. Decided to come to CHW since it is one of the only hospitals in the country that does the GI motility study. -
Dysautonomia Clinic at CHW
JR enrolled in Sleep and Pediatric Functional Abdominal Pain Study at the CHW Dysautonomia Clinic. JR has been having syncopal episodes and dizziness for the past two years. Autonomic Test was abnormal and diagnosis is possible postural tachycardia syndrome. JR began research study in which she wears a watch 24/7 that monitors sleep. She also needs to input her pain level at 7am, 7pm, and before sleeping. -
JR Admitted to CHW
JR is admitted to CHW for bowel prep. It was decided that she would do the prep inpatient via NG tube due to the amount of traveling that they needed to do to get to Wisconsin. There would not be enough time to do the bowel prep outpatient, and it is easier to ensure a good clean when it is controlled by hospital staff. -
Procedure at CHW
Procedures done at CHW: colonoscopy with biopsies, GI motility study catheter placed, X-Ray done in post-op to ensure proper placement of the catheter. JR was very confused and sleepy upon waking up from anesthesia. Once she got up to the floor she was much more alert and oriented. Mom waited in the waiting room during the procedure and was vey concerned about when the doctor was going to be able to come speak with them. -
Future Care
JR’s medical team will establish a treatment plan based on preliminary results of the GI study. Since she is going home on 9/19/13, she will use this treatment plan until the physician can confirm a diagnosis with other specialists on the Monday after. They will need to make 6 month follow up visits at CHW but will be able to continue her care in Montana until then.