The subject of Oscar having a feeding tube has reared its ugly head again.

Why?

Because, despite our best efforts and reasons unbeknown to all of us Oscar’s weight seems to be at a standstill.

In all honesty, the issue of Oscar maybe having a feeding tube has never really gone away, it has been me trying (to a point of being obsessive) to avoid this at all costs. 

 

Our aim at Christmas was to get Oscar’s weight past 12kg and it is now the end of April and although I have been close (11.9kg) the elusive 12kg just seems to be a goal ever out of our reach. 
 

Both myself and the dietician have said we will have a party when Oscar finally reaches 12kg. 

I have previously written that I do not want Oscar to have a feeding tube but now I also feel like I have got to a point where I am trying to prevent the inevitable. 

Feeding Oscar can sometimes feel like a battle and mealtimes should not be like this. 

It should be nice and happy family time. 

As Oscar cannot feed himself and is on a blended diet, I feel like the majority of the day is taken up with feeding Oscar to try and desperately increase his weight. 
 

He has three meals and three snacks a day and is a slow eater so you can see where the time goes. 

Oscar does enjoy his food but the fact of the matter is, I cannot make Oscar eat if he does not want to. 

Although, I have had a numerous telephone conversations with Oscar’s dietician and paediatrician and tried new high calorie drinks and I am still putting food fortification, butter, cream and cheese in his meals we are all at a loss as to why Oscar just doesn’t seem to be putting the weight on. 

If I ate what Oscar does, I would have to go on a serious diet! 

But, for Oscar it just doesn’t seem to make any difference. 
 

Oscar has had a couple of illnesses in recent months which has set us back. 

Oscar does not look underweight, he is slim but not scrawny and he is as healthy and happy as he can be given the circumstances but I know one or two more bouts of illness could be the difference between managing without a feeding tube and him definitely needing to have one. 

Although, the dietician has said that Oscar does not necessarily need to have the feeding tube at the moment and some children like Oscar do, do well without ever having to have a feeding tube it is the fact that any illness could change all of that. 

So, we are in a dilemma. 

We do not know whether to try him with a NG tube as a temporary measure to see if we can boost his calories and therefore his weight but I do not think he will tolerate this and somehow pull the tube out of his nose. 
 

Then there is having the gastrostomy which I am desperate to avoid but at the same time think am I making life difficult for us? 

If Oscar has a feeding tube will it make our already difficult situation slightly easier? 

We can concentrate on having family mealtimes and if Oscar doesn’t eat very much I can give him something in his tube later if necessary. 

Then we can concentrate on doing fun activities and therapies instead of having the day taken up with feeding. 

However, the other part of me feels, I have not come this far to give up!   

I am prepared to fight, but at what costs? 

So, if you would like to share your experiences of your child having to have a feeding tube or like me battling as best you can to avoid one that would be a great help.

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