Thursday, 30 September 2010

UCH - Day Three

Today was a tough day. Adam went down for his post administration scans. He was a brilliant little chap, laid completely still for the full hour and a bit of MIBG, TOMO and CT scans. Together these will give the most complete picture of Adam's disease, a full 3-dimensional image map. I hate scans. I can't imagine any NB parents that don't hate scans. It's a dichotomy of deep foreboding coupled with a need to be relaxed and settle one's child down so they will lie motionless for the requisite length of time. It never gets any easier. I've reached a point where I feel compelled to watch the image as it appears on the screen, but at the same time I really don't want to see it. And so today I sat in front of the monitor and watched various areas of his little body light up the screen without knowing for certain what I was looking at. The official report is unlikely to be available until next week.

Just before lunchtime Adam was taken off his 24-hour hydration, which now means he has more freedom to move around within his room. It took three attempts to get Adam to his scans on the 5th floor (we are on the 11th). Problems with the lifts caused long delays and 'radioactive boy' (as Adam calls himself) couldn't be left out in an uncontrolled area. Allegedly. When we got down to Nuclear Medicine they were either unaware that Adam had high-dose MIBG rather than the normal scan dose, they knew something everybody else didn't about the risk of radioactive contamination, or they just didn't care.

After a shower, change of pyjamas and clean bedclothes he was feeling quite refreshed. I even went into his room for a little game on the Nintendo Wii, albeit with the lead-lined metal screen between us. He beat me at bowling and tennis - I let him win of course.

Tomorrow we find out whether we will be allowed to take Adam out of the hospital for an hour or so over the weekend. The radiation levels in the room don't seem to be receding very quickly so we're not getting our hopes up. More drinking and more showering required. The radioactive agent is excreted in urine and through the skin.

1 comment:

  1. Hi Guys - we had a great response to MIBG with Jacob. Really hope you get the same. Jacob's Daddy.