HECTIC!!!!

The bone scan is at noon, and I call in the morning to do all necessary steps for pre-op. I ask about labs, specifically a type and cross for replacement blood, and I am assured that she will be and blood will be on hand should the need arise. Bleeding is my primary concern. So, we also learn that at noon, the nuclear medicine personnel will inject her with a radioactive isotope which will be used in the scan to identify potential involvement of the bones in this disease. Then the tracer, as it is called, absorbs into the system for a few hours and then the scans are done at 3PM. We coordinate for the labwork and injection of the isotope to be done concurrently to attempt to minimize Madelyn's discomfort. Our good intentions are for nothing as the nuclear med staff is cinfused by the change in protocol and the nurse who attemots to stick her fails to get access to her veins in two tries. The nuclear med tech Ryan tries for Madelyn's 3rd stick and pulls it off nd we get the blood we need and inject her. Total time: 1.5 hours. We'll return at 4 PM for the scan.

In the meantime, I cram some food in my face and we visit Outpatient Surgery to pre-register and talk with anesthesia. We head up to the 9th floor where the PICU is and try to understand the logistics of where we will be until Madelyn moves into her own room.

At 4 PM we return. Madelyn is not sedated. She is, however, strapped in and restrained. Anyone who knows Madelyn knows this is a no go. Her arms must be mobile, and especially her hands. They go straight to her mouth lately, and she was very unhappy. Luckily for us, if you look at it that way, she was so upset during the blood draw she eas exhausted and went to sleep rather quickly. We stepped out to check voice mail and make some quick calls to get Kaitlyn, my 14 year old daughter, here so she can be with us. We returned and I looked at the monitor. The scan is not radioactive like an X-Ray. Quite the opposite. Madelyn is radioactive and the cameras see her radioactivity. I am no sure how it works, but the scan appears rather simple. Everything is black and radioactive partcles show as white dots. Small white dots are present on the screen and some appear to be normal. I focus on what appears to be some concentrated areas, but then remind myself, "You don't know what the hell you are looking at!". She wakes during the scan, and I sing her to sleep to complete the study. We head home after finding out we won't know the results until the morning. I am concerned that the technician sees something and will not tell us. I am concerned that they are afraid to tell us on the phone. I remember that regardless of the results, the next step is surgery and that is quite serious and requires my full attention. I travel to Florence to meet Kaitlyn and Kelli andreturn home by 8PM. Sheila's brother and girlfriend have arrived from NY and we have spaghetti before settling in for the last "normal" night with Madelyn for a while.

Through all of this, she has been so normal. She shows no sign of illnes and continues to develop normally. She would have rolled over in the next few days. We'll pick up there again soon.