He’s looking well!
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?
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.
Short update today…
Little Man Tom, as I’ve mentioned before, is struggling to grow, and keep weight on. This despite being tube fed with lots of good nutritious, homemade food over and beyond what his height and weight suggest he should need.
A couple of weeks ago we saw the paediatrician who felt his Growth hormone treatment might be the cause of the weight loss.
Since I am the one who administers his nightly injections, I’m sure you can imagine that it has been emotionally very difficult topoke my lad knowing it might be making him ill.
But the one thing I’ve learned to do over the years is wait. So wait I did. Until last Friday when I felt that two weeks was quite enough to have checked a fairly simple question with the expert. The first phone call was fruitless: no paediatrician to be found. The second phone call led to an answer machine, so I left a message filled with both facts, questions and emotions.
Happily, Tom’s endocrinologist, Prof is a lovely man and quickly realised that this issue needed to be nipped in the bud. I received a phone call a few hours later from the great man!
Conclusion… Tom’s weight loss is unlikely to be as a result of growth hormone. Prof feels that we need to look into Little Man’s gut. This is something I have been questioning for a very long time, so is worth investigation.
More phone calls, to find the quickest way to an appointment. We have not seen the gastro-enterologist for quite some time, so it may well need a referral from the GP again. I’m hoping that my phone call to the feeding clinic may provide a short cut! We will see.
In the meantime, while the growth hormone question has more or less been put to bed, a more fundamental one about Little Man’s body has been raised…