April 7, 2009

Returned to the Costas Center this morning for the bone scan. Found out that Cardinal Glennon does not do bone scans and we would have to go to SLU Hospital to have it done. We were taken over to register at SLU. The wait to register took about an hour to an hour and a half. We were finally taken to the bone scanning area. Yet to wait again! Finally we were called in to see someone that was to explain the bone scan to us. He took us into a filthy room, closed the door, only to see a huge dead cochroach on the floor! An unpleasant woman then came in to inject the dye. We were then to go back to the Costas Center and wait for a few hours. We were told to return back for the scan at 1:30 p.m. We were finally taken back and the head nurse, Marsha, asked how the bone scan went. She was surprised to hear Trystan had just now been injected with the dye and we were gone there a long time. While waiting in an exam room Trystan became very warm and tired. She went to sleep on the exam table. I had to hunt someone down to find her nurse Marsha to tell her about Trystan. Marsha came in and placed a thermometer slip under Trystan's arm and left the room. Finally after 15 minutes she popped her head back in to see how we all were doing. I had to remind her about the thermometer. She took it out and said, "Oh my goodness! She has a temp of a little over 103!" I asked then if she was reacting from the dye and if I could give her motrin. Marsha told us she needed to call over to SLU Hospital to see about it. While we were waiting for her to return, Dr. Ingle (surgeon) came in to talk to us. She told us that Cardinal Glennon did not have a surgeon for tumors. They were referring us to Dr. McDonald at Children's Hospital. They also told us that he was the best in the St. Louis area. We had to call to schedule the appointment on our own and deliver the results of the MRI and CT scan to him ourselves. Which by the way, no one at Cardinal Glennon went over the results of these with us. While still waining for Marsha to come back to us about the dye and motrin, I began trying to call Dr. McDonald's office about setting up the appointment. After many attempts and no one answering and no voicemail picking up, Tracy calledhis contacts at Wash U for help. Dr. Ingle gave us the wrong phone number! After getting the right phone number, we were told by Dr. McDonald's office to come in the following day at 12:30 p.m. It was now 1:30 p.m. time to be back for her scan and still no Marsha. I went to the front desk and asked for her and also asked again if I was able to give Trystan motrin/tylenol. I was finally given the go ahead to give her the motrin after now running the 103 temperature for about two hours! We were escorted back over to SLU to do the bone scan. The young lady conducting the scan wasn't pleasant at all. After Trystan did great laying still the lady told us Trystan's bladder should have been emptied before the scan. She would need to go empty her bladder. They redid that part of the scan. The escort returned to take us back to the Costas Center. Upon our return Marsha retook Trystan's temp and it was down to about 100 degrees. Another one of the doctors in Hemotolgy/Oncology department looked Trystan over and said she was probably coming down with a cold. Our thoughts were you don not run a 103 fever with a cold! We also asked that day if we were going to get the results of the previous days scans but no response.