nissen surgery and tube fed

[manuelina]

New on talk board. DS born at 26 weeks. 5.5 mo gestational and 3 mo corrected age. Dr wants to do Nissen surgery and gastronomy, Any experience with this? Long term affects?

[glitteryb6]

hi my ds was also born at 26 weeks!

dont have any experience of those ops being done at that age but ds is now 5 and we just had the fundoplication and gastrostomy 6 months ago and WHAT a difference its made.
feeding sooo much easier and he went from being 9.7kg before the op to now being 14.5kgs!

sadly his fundo only lasted 6 weeks as he has dystonic cerebral palsy and suffers from muscle spasms and also got a really bad cold and cough a few weeks after the surgery so it didnt get time to take if you know what i mean, the wrap slipped and because of the dystonic spasms the doc is loathe to redo it sso we are on omeprazole/ranitidine/domperidone to control the puking and its working quite well at the moment!

[manuelina]

Glad to hear that. Is he still on feeding tube? How did you diagnose his CP? So scared as he's so young and still many unknowns...

[glitteryb6]

yeah think the feeding tube will stay long term as no matter how much he eats orally he cant keep the weight on due to the spasms, its also great for medications and keeping him hydrated in the warm weather.

he was ventilated for quite a few weeks and stayed on oxygen till just before he was 5 months old, came off the week before we brung him home from the hospital.

as for the CP, he missed pretty much all his milestones so it was obvious really, doc made it official around 9 months, although i remember another mum in our birth club who had her ds at 24 weeks and he's absolutely fine physically so there's no way of predicting really.

to me ds is just ds and as i have no other children i have nothing to compare him too if you know what i mean?

he is just a wee cracker who delights me every day!

[manuelina]

Such a great attitude! DS is my only child too and love him to bits... thanks for the info

[glitteryb6]

no probs!