I am writing this from a hospital room where we are based for the day. My son is in for day surgery and I am already seeing some of the potential problems with taking an autistic child to hospital for surgery so thought it may be useful to share our experience with you.
I made the fortunate decision to ring the ward first thing this morning to ask that he not be placed in the middle of a busy waiting room due to being autistic and having sensory processing needs. The receptionist very helpfully referred him to the ward’s play specialist. This is the best possible thing to have happened for us today so I would advise anyone facing a stay in hospital, even if for a day to do the same.
The play specialist greeted us on arrival and asked what she could get my son to help him deal with the waiting. We ended up with an iPad, a dvd player and access to a huge range of dvds and most importantly the secret wi-fi password, without which his phone and nintendo switch would have been redundant. He is now exploring the iPad.
Because I rang to explain his sensory needs in advance he has also been given a private room off of the ward. This is amazing as, looking at and listening to the larger room everyone else is in, I am 100% convinced he would have had a meltdown by now and we have only been here an hour! The nurse asked if he wanted the door open or shut and the answer was “can we lock it?”
My son is extremely nervous and has been on edge all morning. After a huge requested breakfast of “a whole batch of pancakes” at 7am, and a last drink of water at 11.30, we have had endless random loud noises and taken three times as long to do everything so getting here was quite stressful. The food and drink issue is starting to be a problem because my son is someone that needs to know he has a drink of water with him at all times in case he needs it. Not being allowed to drink is causing him some stress. The nurse has however just told me he can have water for now because he is one of the oldest patients so he will be waiting longer than the others.
We have been visited by the anaesthetist who was very patient in asking questions and explaining the choices about how my son could go to sleep for his operation. His choices were intravenous medicine through a cannula or breathing in gas, however he was told he would need to breath the gas for quite a while due to his size so he opted for the cannula with magic cream so it didn’t hurt putting it in.
I was also offered the choice of having a sedative in medicine form before hand, however one of the side effects was the possibility of causing hyperactiveness so we decided against it!
The nurse came and put numbing cream on both my sons hands and did some tests while he was distracted playing on his nintendo switch. The numbing cream was then covered in a plastic dressing which caused a big problem due to my son hating the feel of plastic so every time he touched his hand he gagged. The helpful nurse came back with some bandages to cover the plastic so he can’t feel it!
We were then seen by the surgeon who explained that unfortunately my son was the oldest patient today and therefore probably won’t go to surgery until around 4pm so hunger may become more of a problem for us. The surgeon also drew a big arrow and a circle on my son’s skin and explained that he probably can’t go to school for the next few days and won’t be able to shower or bath for a week (great news for my son!) He also needs to refrain from physical exercise for two weeks which he isn’t so pleased about because it means he will miss outdoor education at school.
My son has explored every part of the room, read his wrist band and tried to scan the QR code which to his disappointment didn’t work, visited the toilet, put on a dvd and turned it off again, played on the ipad and then his nintendo switch and just announced he is going to die of starvation soon. We have now been here an hour and a half. I will fill you in on the rest of our day later in part two!
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I am stressed just reading this post! I can’t imagine putting my own son through that torture and he handles hospitals better then I do. I hope everything works out for your son and that he heals quickly so you both can get back to his regular routine:)
Thank you x