‘I don’t want you to feel like you have failed, you haven’t.’

 

Oscar’s Paediatrician must have been reading my mind as that was exactly what I was thinking as my eyes were filling with tears.

‘You are good parents and I am sure you have tried everything to get weight on Oscar, but sometimes for whatever reason it just doesn’t work. But, now I feel it is not if Oscar needs a gastrostomy, it is when.’

We knew that at our upcoming appointment with our Paediatrician that Oscar’s weight (or lack of it) was going to be one of the main topics of conversation.

Despite our best efforts it has been decided (or rather there are no other options left for us) that Oscar will be having a gastrostomy in the new year. 

How do I feel about this? 

Devastated. 

I feel like I have failed my son. 

If you have read any of my previous posts you will know that Oscar’s weight gain has always been an issue. 

It didn’t help matters when in June, Oscar was quite poorly and lost 1kg of weight in a week. 

It had taken us so long to get that weight on and then it was gone. 

‘Catastrophic weight loss’, the dietician called it. 

And, well the word ‘catastrophic’ is never good. 

And, we have struggled ever since to get weight back on him. 

We even tried Oscar with a nasal gastric tube but he just couldn’t cope and kept gagging and being sick. 

It defeated the object of what we were trying to achieve as there was no way I could feed him safely with the tube in, so we took it out. 

It had only been in a couple of hours. 

Oscar was very traumatised by the NG tube and it was traumatic for us to see our usually happy little boy like that. 

Deep down, I knew that the gastrostomy was probably going to happen some day but this was one of things I really didn’t want for Oscar. 

He has been through so much already that it just feels like it is something else for him to deal with and I didn’t want him to have to go through surgery. 

I am worried about infections, how he is going to react to the tube, how he is going to take to tube feeding, what if the tube comes out, what if I accidentally do something wrong. 

My list of worries seems endless! 

But, children are resilient and Oscar is certainly made of strong stuff. 

He has definitely proved that with everything he has been through already and he is still the happiest person I know. 

So, I am just waiting for yet another appointment now to see what happens in the next chapter of our special needs journey. 

He has already been through so much already.


 

 

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