Day #14. Autism and hospital visits.

In about June of last year, poor old T really got hit hard with anxiety.  His sleeping deteriorated enormously and his general health and well being suffered.  In the myriad of doctors and therapists visits we re-evaluated his hearing and general ear, nose and throat health with both the Neurosensory Unit and an ENT.  T had grommets inserted when he was 18 months old due to recurrent ear infections and ear perforations.  We knew he had enlarged tonsils but when we reviewed last year the ENT was concerned that his large tonsils were causing upper airway resistance while he was sleeping.  He was snoring and waking up during the night a number of times.  We decided to go ahead and have his adenoids and tonsils removed.

I had a chat with the anaesthetist ahead of time and he explained that he’d use the gas and not use any needles until T was asleep.  I also organised to ensure we were first on the morning list.  This meant that T only had to fast from the evening before so feeling hungry and thirsty would be less of an issue, and we wouldn’t have to wait given that he was first on the list.  He was allowed to take in a comfort item or toy.  He selected a storm trooper … of course!  All these things contribute to a much smoother run.

T is very under-responsive on the outside to both pain and anxiety.  When he is uptight, his facial affect becomes very flat and he stops talking.  You could tell he was concerned about the surgery but he wasn’t going to show it.  T started micro-managing everyone and everything from the moment we arrived at the hospital.  This is generally a sign that he’s feeling stressed.  He was happy enough to put the hospital gown etc on but he wasn’t keen to get on a hospital bed to wait.  He kept telling me, “I’m not sick mum and I’m not a baby.  I’m not getting in a bed for no reason”. He then insisted on walking himself down to the operating theatre and again made sure he was in control by insisting he could get himself up onto the theatre table without help!  He continued his control of the room by asking who the anaesthetist was.  He then made sure that the anaesthetist knew that he was meant to use the gas.  The hospital staff honestly didn’t know what to make of it.  There was some chortling.  I then asked him if he was ready and he said yes.  The anaesthetist placed the mask on his face and without any fuss or fight, he went to sleep.  The hospital staff were again surprised.

The no fuss stopped the moment he woke up.  He was really distressed by the pain but also very distressed by the environment.  He just kept crying and begged me to take him home.  They like to keep children in for 24 hours for observation following a tonsillectomy and then once the children have had something to eat they will discharge them.  I stayed with T in the hospital overnight and we did manage to get a bit of sleep thanks to some requested calmatives for him.  Poor T hated the sounds and noises of the hospital, he hated the drip in his arm which stayed in for 24 hours, he hated all the strange nurses being in his personal space.  He woke in the early hours of the morning and was so upset that he was sick.  He was in too much pain and discomfort to eat anything and even visits from all his favourite people didn’t help.  I just couldn’t calm him down.  All I wanted to do was scoop him up and take him home to his much loved dog and loved ones.

The nurses were reluctant to discharge us because T wasn’t eating or drinking much.  He was hysterical!  It was hard to assure them that the minute we got home into his familiar environment, that I was sure I’d be able to convince him to eat and drink.  He was simply too distressed in this unfamiliar environment to settle.  After a bit of a battle with staff, we were discharged and of course he was a million times more calm and settled the minute we got home.  It did take him a full two weeks to recover.  It really isn’t a pleasant surgery but I do think the procedure has improved the quality of his sleep.  I think we did as well as we have under the circumstances.

If you have an autistic child who needs to go to hospital, I would suggest that you:-

  • Request that your child is first on the list for the day.  This means you will be unlikely to have to wait and also makes the fasting process easier.
  • Ensure that you are permitted in recovery or at the very least that you are nearby in the event that your child is upset when they wake.
  • Make sure you give your child a familiar toy or object to take into the operating room with them.
  • Have a phone consult with the anaesthetist in advance of the surgery so that you feel reassured of the process they will use to get your child to sleep. In my experience, the gas really is the gentlest way to get them off to sleep.  IV needles can wait until they’re asleep.
  • Explain to the doctor/surgeon that your child is unlikely to eat and drink in an unfamiliar environment when also in pain, and organise an alternative plan in the event that this happens.

Sometimes, despite the best planning in the world there are hitches.  However with a little advance planning and good communication with your doctors and nurses, hopefully the hospital experience is as pleasant as it can be under the circumstances.

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