Caustic ingestion leading to gastric pull up.

[Nomk]

Hi. Im looking for someone whos been through the similar situation my son has been through as i dont know what to expect the older he gets.

Basically he got hold of a rinsed jug id used to unblock my sink and the tiny bit of residue water that was in it he got in his mouth leading to severe burns to his oesophagus. Lips and mouth. His mouth and lips recovered perfect. He had rougly 50 balloon dilations in 18 months. They then tried steriod injections into the oesophageous which failed to. So they decided they had no other option than to remove his oesophageous and perform a gastric transposition.

He currently still has a pej in situ for back up if his daily intake isnt great. He recovered well from his his big surgery. Had a few blips along the way which was to be expected. He still wretches alot of food back up im finding it hard to get weight on him.

Has anyone been in a similar situation thats older hes only 3 id like to know as he gets older how different things will be for him. We've been to hell and back this last months. And he still has little blips along the way. Any feedback from someone with similar circumstances for some advice ans help. Many thanks id appreciate it.

[gutlesswonder]

What a tragedy for such a youngster.

There is no quick potted answer as it is such an enormous and complicated subject.

However at this site you will find possibly the world's greatest collection of sufferers and symptoms and remedies.

There really is no option but to plough on and read as many posts as possible and so gain an insight into what lies ahead.

Certain aspects are obviously critical - uppermost might be ensuring an adequate diet which will not stunt his growth.

Secondly I would worry about the psychological impact. Hopefully he is young enough to take it in his stride.

Most of us have experienced the procedure in late middle age due to cancer and long after organ growth has ceased.

How well do you feel supported by your medical team ?

[Nomk in reply to gutlesswonder]

Its been awful he takes it all in his stride doesnt bother him at all hes the happiest 3 year old now he never ceases to amaze me after all hes been through he just bounces back. Its me that constantly at my wits end with worry. I would just love to know what lyes ahead for him. He eats well after having the big surgery has bouts of wretching the food up. Hes tiny i find it very hard to get weight on him he never loses weight but its hard to get it on him. He get a pej feed overnight and they changed it to extra calorie milk. The medical team have been outstanding. I couldnt have coped through it all without them. His consultant is amazing. And i really appreciate your reply as i feel very in the dark about it all as i dont know anyone else whos endured this horrific accident that's changed his and my life forever. Many thanks

[gutlesswonder in reply to Nomk]

What has your team advised regarding your son's sleeping position?

[Nomk]

Hes to sleep at at least a 45 degree angle while feed is running. While its ok hes ok to lye normally. Why you ask?

[Bernadette100]

Good luck to you and your son..as has been said most of us are middle aged before having this operation. Sorry I don't know anyone else in this position but wanted to wish you well after such an awful time.

[Nomk]

Awk thank you so much that is so nice and thoughtful. I really appreciate. And i wish you well x