Change is hard. Not knowing what to expect is difficult.
Layla had to go to’ her’ hospital for some investigations and a PEG change. She has been having these since she was a baby so you would expect her to be used to it right? Wrong.
As she is getting older, her disabilities are becoming more prominent. Probably because she is more aware that things are going to happen which are out of control. Something that makes her anxiety more intensified, something that has come from her Foetal Alcohol Spectrum Disorder and Autism.
I can prep Layla as much as I can, such as talk about the investigation and PEG change and show photos but I can’t answer questions such as what time will it happen, what’s happening now or prewarn her when the doctors or nurses decide to do something such as when the doctor says mum I'm going to go through the what could happen list (in front of Layla ). Not good for a child with anxiety.
Things out of my control such as no pillow or the TV is not working and nurses saying they will do stuff and then don’t. The smell of the gel they use to hold the NG tube in place, the noises, the lights, the temperature of the shower, all of which lead to meltdowns, not the happy Layla most are used to seeing.
However, sometimes, just sometimes you get a really really good member of staff like the anaesthetist consultant, who adapts and gets into Layla’s world and when someone does that and has the patience then you get a less anxious Layla.
People like this doctor are rare but never forgotten as he is not judging but trying to make it a less horrible experience for Layla.
