Friday, 12 August 2011

#Special Saturday Post - One Step Forward Two Steps Back


Last week I blogged about how much more fluent & alert chrissy was after the recent meds change. Unfortunately there's a downside. Her meltdowns have been more intense & she has ripped a toenail off. Chrissy's nurses can't move her to a safe area when she kicks off because - get this - she isn't under section. She gets herself in awkward spaces sometimes in meltdowns - she has jammed her foot under car seats & all sorts. She doesn't tolerate wound dressings so there is a risk of infection from her injuries. She is on antibiotics, which make her more irritable. It feels like we're going round in circles.

I know I keep banging on about Naltrexone but I wish there was some way another trial could be done with close monitoring of Chrissy's platelet count. It's the only intervention that has EVER stopped Chrissy's self-injurious behaviours. I've asked her medical team to get in touch with the doctor that prescribed Naltrexone 13 years ago for an objective report on its benefits. Medical notes from that time have been lost.

Chrissy's been a joy so far today. When this photo was taken she was in my office ordering meal ingredients online. She was saying what she wanted, ie sausages, baked beans etc., I was writing the word down & she was typing it out then adding it to the shopping basket to see a picture of the item on screen. We played online games then sat in my car listening to my ipod. I'm experimenting with different activities now Chrissy is more engagable because her nurses asked me what she most enjoys doing. I had been trying to find out what activities she was doing after becoming concerned about how she spent her time on the ward.

The need for someone like Chrissy to have a structured daily activity programme is so basic I'm baffled there doesn't appear to be anything in place already. The activities she enjoyed were documented when I completed admission forms & where is an OT in all this?

The hospital does have activities but they are in another area, which Chrissy is still too volatile to visit. Surely if you can't take the mountain to Mohammed.....? If she isn't kept occupied Chrissy will play up. Who wouldn't? I know she won't always be settled enough to partake in everything she's offered but a variety of activities should be available on the ward for when she is. It's a constant frustration that I have to keep on & on to get Chrissy's basic needs met.

This weekend I will continue to try & re-engage Chrissy with old activities that she'd lost interest in.

So far so good. We've had a wonderful time - & no meltdowns!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page -http://www.facebook.com/SpecialSaturday Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog - http://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday




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