Monday, August 9, 2010

The Not-So-Fun Part of Chicago

Getting a hug from Mommy before surgery.On Monday, July 26th, we had to be at Children's Memorial at 7 a.m. which meant leaving our hotel in Itasca by 5:30 to ensure we were on time, considering the severity of Chicago traffic.
Before the surgery he got a new Rintoo from Ni-Hao Kai-Lan (right) to accompany his pal HoHo (left).
The needle was left in his port so that he could get infusions through it the next day.
The procedures went off with only a small glitch. They had planned to put the port on his left side but, for some reason, couldn't access that vein. He was very overwhelmed by all the beeping equipment and crying babies in the recovery area so they quickly moved him to his own recovery room. He wouldn't speak at all for a couple of hours after surgery aside from the occasional "I wanna go home." So sad.....Just to recap, he was put under with general anesthesia and then had another MRI, muscle biopsy from his left thigh, and then had the port placed in the right side of his upper chest. Anna, Dr. Pachman's nurse, called today to check on Trip. I asked her if the muscle biopsy or MRI reports were completed. (They quickly read the MRI before the muscle biopsy to make sure the thigh, the usual place to take muscle from a JDM patient, would be appropriate but we weren't told much about the findings.) The muscle biopsy has not been completed but she did explain the MRI findings which were significantly different from the previous MRI at ACH not done with the proper technique. The 2nd MRI showed "abnormal signal throughout, primarily in thigh and pelvis. strongest signal in gluteus and"..... some muscle in the back of the thigh which I can't remember at the moment. She's going to fax us a copy of the report so we can have it on hand. Therefore, not that we ever doubted this, we now have a concrete diagnosis of dermatomyositis, instead of a diagnosis based on clinical findings alone.
Trip then got his first infusions through his port on Tuesday, Wednesday & Thursday which take about an hour and a half. He got Solumedrol, the intravenous steroid, all 3 days and on Thursday also got a low dose of methotrexate, a chemo drug. Since it's a low dose he hasn't had any nausea and shouldn't have any hair loss. Trip is such a trooper and has done remarkably well with everything. Thank you God!