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Supporting my daughter through surgery

Ashtreejo

Hello,

My 14 year old daughter has high functioning autism and ADHD. She is very bright and articulate, but suffers a lot of stress and anxiety. New situations and people, and changes of routine are particularly hard but she generally copes very well with some support.

Unfortunately it is looking very like she going to need a major operation in the new year, involving a 1-2 week hospital stay and a few weeks off school. Obviously this would be stressful for any child but we are really worried about how she will cope. She's done brilliantly with MRIs etc so far but its taken a huge effort.

Has anyone experienced this and do you have any advice? We have already contacted her usual ASD consultant and done some research about what the hospital (Sheffield Childrens) offers, but it would be great to hear from someone with experience.

Can anyone help please?

  • in reply to Plastic

    Thanks that's a good thought. I'll ask her what she would prefer.

  • Depending on how your daughter is, she may prefer to be on the ward because being in a side room can be very lonely and you feel forgotten so there's always the anxiety that you actually have been forgotten about.

    I preferred the ward because there's always something going on - it may be very noisy and chaotic but at least there's people around in case she needs something.

    There are pros & cons for each option - you need to decide which your daughter would prefer.

  • in reply to NAS36609

    That's extremely helpful advice thank you very much. I'm glad you got through it so well.

  • I didn’t have to stay in hospital for as long following my surgery, but some of the things I did in advance that helped on the day and following were:

    1) Made all of the staff aware that I am autistic and that I require clear explanations of what will happen before they happen.

    2) I asked for copies of the forms that would be filled in on the day of my surgery beforehand so that I was prepared for the questions and therefore had my answers ready in advance.

    3) I requested a side room post-op so that I wouldn’t feel so socially anxious.

    4) We made the surgeon’s secretary aware of my autism which meant she put me at the start of his list for that day and therefore I wasn’t left waiting for hours before my surgery and getting more and more anxious as a result.

    5) We made them aware at my pre-op of my dietary requirements, so I would have something I could actually eat on the Ward afterwards.

    I think overall the main things are to try and get as much information as you can in advance and for it to be as specific as possible e.g. for months before my surgery I researched exactly what it would involve including what a general anaesthetic was like, exactly what my rehab would involve and for how long, exactly what happens to you post-op, I visited the Ward I would be on post-op etc. All of this helped to alleviate my anxiety when it came to my procedure, as did the anaesthetist who was very happy to talk me through exactly what she was going to do to me before I went to the theatre.

    Obviously it depends what surgery you’re having but for me the worst part in the hospital was actually feeling so sick from the drugs they give you for the anaesthetic - they make your blood pressure drop and as a result I couldn’t sit up or eat/drink for a full day post-op because otherwise I was sick or fainted!