We did get to meet with a Palliative care doctor who walked us through the dosing and uses of CBD oil for medically complex kids. We have used a tiny amount of CBD for Aimee for a couple of years and noticed some more cognitive awareness, but we were cautious about using very much without guidance. This was incredibly helpful. We have recently discussed trialing gabapentin for Aimee after seeing how alert and comfortable she was using the high level pain meds post spinal fusion. We were discussing its use with palliative care when it came up that she has been on this low level of CBD. They have seen it to be effective in helping kids with pain, anxiety, focus, tone, and seizures. It was really educational and we are excited to work towards increasing Aimee’s dose to see how she does with it.
We changed the dressings on Aimee’s back for both her spinal fusion and a grade 2 pressure ulcer on her sacrum. Generally it looks really great. There are a couple small areas up near her neck that we will be keeping our eye on to make sure they heal well. The lower area, which caused SO much trouble last time, appears nearly completely healed. The pressure ulcer is new since surgery and it unfortunately means we need to get up and turn her through the night at home, which we rarely have been doing. Currently we are also giving pain meds during the night so hopefully we line it all up well and maximize sleep for everyone.
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