Some of our special needs kids have more anaesthesia in a year than we will have in our lifetime. Some of them deal well with the process. Others might always struggle.
Then there’s the in-between group, who sometimes manage, and sometimes don’t. My daughter belongs to this category.
Dancing Wombat hasn’t had as much surgery as some kids, but she’s had more than her three brothers, mother and father combined. When she was little, “banana breath” and “chocolate breathing” seemed appealing. However, as very recent experience has shown me, she has developed a phobia of the breathing mask, and has the strength of at least two adults when it comes to resisting it.
I thought that I had briefed her sufficiently. I also thought I had adequately briefed the anaesthetist. However, evidently, things change with time. What was a bit of wriggling last time she went into surgery was full-on resistance this time around.
She had met the anaesthetist. She also had time with a play therapist beforehand and seemed to be happy and relaxed. The play therapist came with us into the little anteroom, where Dancing Wombat contentedly played with a hospital iPad as preparations were made around her. All signs were positive.
Until Dancing Wombat spotted the mask and panicked.
“No, no, not the mask!” She struggled to sit up and push the mask away.
“All right, that’s fine. Don’t worry. We won’t do the mask. We can give you an injection”, said the anaesthetist, removing the clear patches covering the numbing cream on her hands.
“No, no, not a needle!” Her anxiety grew, and with it, her strength.
What was distressing for her was almost equally distressing for me. It took both me and a muscly male nurse to hold her still while the anaesthetist opted to hold the mask as gently as he could against her face, while she continued to fight against it. At last, her breathing slowed. She was asleep.
I left the anteroom with tears in my eyes. I feel sorry for the medics who are doing the best they can. I feel sorry for my daughter who understands what is happening on one level, but doesn’t on another. I feel angry that her sensory issues play such a big role, and worry that in needing to restrain her, she will be even more fearful of this procedure.
It is critically important that we find a way through this resistance, since everything that can be done under a local anaesthetic for most people needs to be done under a full general anaesthetic for her, as she just can’t stay still.
At least in the paediatric system, people are used to dealing with wriggling, scared children. Hence play therapists and iPads! However, will there be the same compassion and understanding once she is out in the adult system, in the not-too-distant future? I hope so, but I don’t know.
I suspect that it might be the luck of the draw. So, following the mould of so many special needs parents before me, I’ll have to be a bit more proactive.
Short of getting myself invited to anaesthetists’ conventions to speak (!), I figure the next best thing is to make a checklist for me to go through before she needs surgery again. This will list what works, what doesn’t and anything else that might be helpful for the medical staff to know. It will help me be more systematic next time I am in this position – which will be in less than two weeks!
So, here’s what I’m thinking.
If you have anything to add from your own experiences, please let me know. We can make this a resource for everyone to use. Let’s call upon our collective wisdom and experience, and spread the word!
Until next time, Happy Wombatting!
P.S. Dancing Wombat had to return to theatre two days after her last surgery, but there was already a cannula in her hand from before, so the “sleeping” drugs were able to be administered that way. Nevertheless, when the anaesthetist (a different one) suggested that she might like to use the mask to get some extra oxygen, she was ready to bolt for the door! She didn’t want to use it like a snorkel, a straw or even waft in in front of her – nothing! Luckily, they were able to whip it on once she had drifted off.