Finlay and g tubes.

[Guest guest]

Finlay has had an ng tube in for over 3 months now. In that time his

oral intake has spiralled doenwards and for the last 5 days he will

eat absolutely nothing orally. i am tube feeding him at every

meal/snack time -taking such a backwards step is not a good feeling.

He is also still vomiting frequently and I feel that the ng tube is

contributing to his vomiting - its as if he is trying to vomit it

out. Anyway at our SLT appt this morning we talked at length about

his feeding - she observed him (not) eating!

He puts food in his mouth and then spits it out - and he coughs and

tries to make him self sick.....

She is going to write a letter to Finlays paed recommmendig a g tube

as a matter of urgency.

I have mixed feelings about this - I know it is for the best but

ideally I'd like a scenario where he doesn't need a tube at all!!!

(but I realaise this is unrealistic for us at the moment!

Ultimately it is clear that this is the only way forward for FInlay-

and so I know there are a few of you whos kids have had the surgery

recently and so I'm just looking for reassurance. How long was the

stay in hospital and how long did it take for recovery.

Also I'm wondering if any of you have had experience with an ng tube

causing irritation of the oesophegus and if there is a short term

solution to this as we will probably ahve to have the ng tube for at

least another month as the g tube surgery is arranged.

Taking the ng tube out even for a few days is not really an option

for us as as well as feeding finlay extra calories it is also

necessary to sustain his blood sugar at a normal level - it can drop

even after just a few hours without food.....

Thanks for any advice/reassurance/anecdotes anyone can offer!

In rainy and windy and cold and wintery Wellington, New Zealand

Mum to Finlay the noneater 8.24kgs, 72.5cms (18lbs,28inches ish) ng

tube, ??RSS, ?GSD