Doctor:

He’s looking well!

Mother:

Really??

He’s looking much the same as ever.

He’s exhausted all the time.

He can’t survive without a tube.

But you’re a doctor, you know these things… so?

mmm… well he’s ok, but we’re struggling with the same things

Little, how are you?

Little:

I’m fine

He’s never felt any different… so this is normal to him, of course his answer is “fine”

But let him speak, allow him his voice,

because contradicting that “fine” is like digging a hole for him to fall into.

The consultation that follows will be wishy-washy, blurry, with few decisions and at best a fuzzy plan to follow up in a few months, reliant on referrals that may or may not come to pass, because the doctor feels no sense of urgency.

Why? Because, perhaps, I have not been able to convey the urgency?

Because, perhaps, I was not strong enough, with Little in the room to stop her at the start and tell her, “no, he is not looking well”.

Maybe we could do things differently…

***

Before the appointment, an agreement that Little should not be present.

His physical body will not advance his care,

but many things must be discussed that could be psychologically damaging for him to hear.

How is Little?

He is much the same as usual.

He is tired, all the time, so much so that at eleven years old he needs to be in bed by 6.30pm.

He is often yellow, though this is improved when using medium chain fats in his diet.

His yellow colouring worsens with fatigue.

He is still dependent on four tube feeds a day plus an overnight feed.

He is ill, in other words, every single day, and has been for the last eleven years.

It’s also becoming clear that these problem are slowly getting worse.

What would you like to change?

I would like us to ask questions that might lead to answers.

So I would like a metabolic specialist involved because (insert my research).

I would like us to accept that tube weaning is not possible given our current knowledge.

I would like Little’s symptoms to be considered afresh, and with a sense of urgency.

I would like you to realise that even if you are new to Little, we are new to this world.

Our journey is already 11 years old.

I would like you to acknowledge the psychological damage that Little has undergone.

I would like to explore how we can help him.

I would like you to remember three things, each and every time you see or speak to me:

I am not your patient, I am your patient’s advocate.

I am a professional mother, with far more time, effort and motivation to find answers for this particular child than you have in your working life.

If you have my child’s best interests at heart, you need me on your team.

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