Charlie is still recovering from a recent illness that saw us admitted to the Children’s Hospital here in Brisbane.
She started by sleeping for a week.
Quite literally (not the way teenagers use the word), she slept for seven days and only awoke when forced.
We managed to squeeze in a few drops of fluid and the all-important antibiotic, but five or ten minutes was all the 'awake' she could manage.
We went to the GP’s office on days two, four, and finally on day six we took her to the hospital.
She had been diagnosed with Influenza B and then mycoplasma pneumonia as her cough developed, and had been on antibiotics for five full days when we were admitted.
Still, she slept on.
We had taken Charlie to the same hospital where we regularly see the Rett clinic, the neurologist, and have had multiple visits and waitlist spaces in other departments.
We thought this would help because her details would be on file.
Alas, apparently the ER system doesn’t speak to the outpatient system in any way, so they were unable to access any of her information.
Frustrating, certainly, but I’m not sure it would have helped much anyway.
I’m not particularly phased by this, as I think it’s probably unreasonable to expect that they know the ins and outs of every rare syndrome there is, so I had my spiels ready:
“You’ll have to direct your questions to me because she doesn’t speak”
“Her usual running temperature is about a degree lower than average”
“She can’t sit herself up when she coughs”
“No, she doesn’t use the toilet”
“This is not normal behaviour for her”
Following these discussions, there was an interesting mix of responses.
Some were quick to dismiss her symptoms as Rett-related (definitely not), whereas others were keen to treat her exactly as they would any other four-year-old (equally flawed).
Most were openly interested in her story and asked lots of questions, which I absolutely don’t mind answering if it means that they’re better equipped to help her in the end.
Keen to eject us from the hospital because her vital signs had been acceptable all night, a junior doc had been sent to talk to me.
She started to ask Charlie how she was feeling that day, so I quickly jumped in to explain.
Upon hearing “Rett”, though, this doctor smiled and said, “I’m familiar with that.”
I breathed a huge sigh of relief and could almost feel the tension draining out of my body.
Until she added, “You get it from aspirin, right?”.
Please, medical professionals, if you don’t know something, just admit it and ask questions.
Comments like the above just make you look stupid and borderline incompetent.
I managed not to laugh – at least, until she (red-faced) left the room.
Do you 'baby wear' your disabled child?