I’m sat here in my cosy living room at the end of a long and somewhat harrowing day.  The morning was dedicated to Sweet Girl as the “Behaviour Support” team were in school to observe her and try to put a plan in place to help her at school.  There’s not much to say just yet.  They’ll be back in six or seven weeks to see how their suggestions have worked.  The emotions, questions, doubts, hopes and fears surrounding this intervention need to stay in their box right now, to be revisited a little later on.

The unwrapping was a little tricky, but such fun, and sooooo yummy!

As soon as that meeting was over, I grabbed Little Man and Sweet Girl and we hopped on to a train, London bound.  We know the stations off by heart now, but they were kept busy to some extent by packed lunch.  Little Man did well today (he even had breakfast, for the first time in weeks) and was proud to say that he could tell Mr E that he had eaten “all that!!”.  I found a rather delicious miso soup and seaweed wrap at the Wasabi stall in the station and we set off on foot for the hospital since it was a beautiful day.

Feeding therapy.  Tube weaning.

Tom was assessed in December of last year, and we began our tube weaning odyssey in March.  Tube feeds were de-calorised and the amount of feed was reduced, all in the hope of improving Tom’s appetite.  At the same time, Tom has been encouraged to eat a greater variety of foods, in greater quantities.  I’m not sure how much he has understood, and he is certainly not really on board.  On the other hand, he has worked really hard to taste new foods, and now eats substantially more than he did – certainly enough to replace the calories we removed…

Tom in January 2012, liking his Belly Buttons which keep his stoma clean and infection free!

 

Psychologically, he does not want the tube to go away.  It’s so much a part of him that the idea of no button is really scary.  BUT… he does want to be rid of tube feeds, which he finds annoying, an inconvenience and which generally make him feel sick (so does oral food, but that’s a whole other matter).

Behaviourally, there’s no doubt that learning to eat when you are nine years old and have always been tube fed requires a major adjustment.  I think it also requires a maturity and a level of cognitive understanding that is more and more obviously beyond Little Man right now.

Physically, tube weaning requires a healthy body.  One that works as nature intended.  Tom’s difficulties with food have never been investigated.  This is the one area in which the label of Noonan Syndrome has held us back.  Because many children with this syndrome have feeding difficulties as infants, it was simply put down to that.  But very few (I think it’s about 10%) ever need tube feeding.  And very few continue to have significant problems past the age of two or three years.  It may well be “Noonan syndrome“, but actually, there is almost certainly a physiological reason for the severity of Tom’s problems.  My gut says some of the problem is developmental or neurological.  He never had a rooting reflex as a baby (the reflex that makes babies’ heads turn towards a breast and “root” for a nipple to drink), and never had any inclination to eat.  I also suspect that his body doesn’t process food properly.  In my experience, I can keep him healthy and growing (albeit very slowly) by pumping far more calories into him than his weight and height suggest he needs.  Clearly there are questions that need answering.

 

The feeding therapy team at Great Ormond Street are lovely.  They are not sending us away, and they are wonderfully supportive.  They simply cannot proceed with so many unexplained issues going on – not to mention his colour (very yellow, no sign of liver problems), daily headaches, continuing exhaustion and weight loss despite “enough” food going in.  I have been encouraged to increase his tube feeds if I feel he is losing too much weight, they keep telling me to trust my instinct.

looking gaunt in comparison to January…

My instinct says – more feed!!!  It’s not helped by seeing the photo of Tom up above only 9 months ago… compared to this one taken a couple of weeks ago:

Not to mention the skinny legs which are covered in bruises rather more than normal.

Conclusion from the team:

We must suspend tube weaning.  It is absolutely appropriate that Tom be tube fed (I asked for clarification – doctors have been telling me for years that he shouldn’t be).  I am to increase his feeds as I feel necessary.  He will almost certainly require tube feeding for at least a couple of years based on the information we have today.

 

 

So…  two year sentence?

Or two year reprieve?

Goodness, I don’t know… both I think.  Despite my fears and doubts, I have been wholehearted in my efforts to help Little Man eat better and rely less on the tube.  I come away from today knowing that there is no short term future without it… which feels a little like a sentence.

And yet, tube weaning is hard work.  Physically and emotionally it is utterly draining.  So the idea of taking a break is in some way a huge relief.  It may not be as long as two years before we try again, but what we have learned is that we cannot do this without Tom’s full cooperation.  Which means his complete understanding of the aim and process.  Two years is optimistic, I think, to achieve those requirements.

I’m going to feed nutrients into www.nutritiondata.com once again, and figure out what I can do best to get him better.  I need my little boy back, not the skeleton that’s upstairs in bed, bruised and exhausted.  I let him get too thin… but I needed the professionals to see what I saw two months ago.

Sentence.  And Reprieve.

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