[tri-med] Re: Nissen??

Hi Irene!
I think I talked about Keren's surgery a little in a tri-fam email the 
other day, but here's the gist of what we experienced:

Due to Keren's severe reflux, and slow weight-gain due to difficulty 
eating, we decided to go ahead with g-tube and Nissen fundo surgery 
when she was about seven months old.  We knew we'd be getting the 
g-tube, and had heard a lot (both from Keren's doc and through the list 
here) that often just having the g-tube actually increases reflux 
because of the change in the position of the stomach.  We felt there 
was no point in taking that chance (since it would have been more 
difficult to go in later).

Keren came through surgery with flying colors.  One note:  our doc not 
only did the surgery laproscopically (sp?), but did a newer procedure 
using robotic arms and computer interface which is even less invasive 
than the laproscopic surgery.  The other alternative to these types is 
the kind that means a cut down the abdomen--more painful, and longer 
recovery.  The concerns with laproscopic is some doctors aren't 
experienced with using it on little babies and you can't see as much 
with the visible eye (a camera is used).

Since the fundo:  We had two glorious months with basically no spitting 
up--some gagging, but no spitting.  Then Keren started to spit up 
again.  Not as much as before, but still, there it was!  We had a 
contrast study done (x-ray, no anesthesia necessary) which showed that 
actually everything was totally fine with the fundo.  Our doctor had 
particularly made sure that he didn't make it too tight, because if 
it's too tight it can cause difficulties with swallowing saliva, not to 
mention food.  It can also impede burping.  Though the spitting up is 
annoying, we are glad we did go through with the fundo since we know 
things are better than they were before.  Keren is still on meds: 
Zantac and Reglan.

So that's our story!!!  Hope it's some help and feel free to ask for 
any clarification.  I know what you mean about being concerned about 
surgery and anesthesia so soon after all the other tests, etc.  Not 
sure what to say there.... Sorry!

Loren (wife to Kraig, mom to Keren, T18, 14 mo.  :) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075


On Thursday, November 27, 2003, at 11:07 PM, Irene Smith wrote:

> My 5 month old has a rare chromosome disorder - a partial trisomy of 
> 17p.  She has been battling reflux and we just found out, and 
> corrected, severe hydrocephalus.  The drs are eager to also quickly 
> put her through the Nissen procedure along with a possible g-tube.  
> She actually was eating fine, just throwing up a lot, then refusing to 
> eat much at all.  We did get the vomiting under control for a while 
> and was using an ng tube to supplement, but the vomiting came back and 
> was probably due to the hydrocephalus.  The drs really think she needs 
> the Nissen SOON, but she just had the shunt surgery, and a scope this 
> week.  That was under general anethesia twice in less than a week 
> along with many other tests.  I feel like she needs a break before we 
> make that determination!!!!
> Anyway, if anyone has a child who had the Nissen, please give me the 
> good, the bad and the ugly!  I hate to quickly put her through surgery 
> only to find there are other, often worse, problems as a result!!!!  I 
> want all information I can find before I make this decision.
>
> Thanks,
> Irene (Christina - 2, Caroline - 5 months, partial trisomy 17p)
> http://www.babiesonline.com/babies/c/carolinerochelle
>


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