A week of various scans, including an MRI on her brain under a General Anaesthetic, plus the usual CT and MIBG scans. As has happened previously, we attended nuclear medicine to have radioactive dye injected the day before the scan for the MIBG. The syringe containing the dye is placed inside a lead sleeve to protect the staff administering it, just to protect their hands from holding the syringe for a few minutes while it is injected- a daunting thought as these scans are needed so regularly and Romy needs this radioactive liquid injected into her body every time. For the first time we decided to try the MIBG without sedation. In the past the sedation has never sent Romy to sleep, although it may have helped her relax and stay still. But we weighed up the risks and benefits and as sedation always seems to make Romy a bit cranky we decided to try without. Some of the radiology staff were dubious as they said staying perfectly still for 30 minutes and for another scan immediately afterwards for 50 minutes was a big ask even for an adult. But we took a chance and it payed off, Romy didn’t move an inch and only got a bit annoyed after an hour and a half in the last few minutes of the scans, but I convinced her not to move even as she lay on the scanner bed crying and cross because her foot felt uncomfortable and she wanted to move it. Being sedated for the scans in the previous month’s meant that she didn’t have any clear memories of them, so she did especially well as this essentially all felt new to her. The large scanner also moves around slowly over the 50 minutes, at some points completely covering her head and moving to within millimetres of her face, immediately above her, so it must feel really claustrophobic. I don’t know who was more proud of her for staying so still, me or her.
Helen & Tom
