Re: Re: Nissen: Advice needed

[Guest guest]

I know that lots of people have nissen's and do fine with the surgery and

tolerate them without a lot of issues.... That was not our case. Shayden

went in for what was supposed to be a g tube procedure. He did vomit some but

his reflux was mild at best and that was before meds were started to

reduce acid. He went in to the procedure eating by mouth and enjoying it!That

was over 3 years ago and he has not been able to eat since. His nissen was

wrapped so tightly around his esophagus that he could not or would not take

anything by mouth after which would have been ok except that less than 10

hours after his tube was placed , his nurse placed Topomax sprinkles through

it and completely clogged it making it unusable!

For us, I can't help but feel that maybe if he did not get both nissen

and gtube, everything would have been different! I think it's worth risking

having to have a second surgery rather than putting them through a more

involved surgery in the first one . For me, I have regretted my decision each

and every single day since. I know there are no guarantees with surgery, I

only wish that i was better informed prior to his sugery and that maybe we

would have tried a test feed prior as well. Make sure that the surgeon is

well experienced with neurologically impaired kids and has colleagues at same

hospital for support. I am not trying to scare you as I know that's not

what you need. I just wish I knew that this could be our results, maybe I

would have still ?Best regards, Jodi

In a message dated 11/8/2011 7:42:09 A.M. Pacific Standard Time,

me@... writes:

My son has a regular Gtube but I wanted to share what a friend was told.

Her son does not have PMG but has other issues. They told her he must have a

Nissen placed, that was about 10 months ago. He did have severe reflux but

he grew out of it! I know it's a major surgery and if your little guy needs

it, he needs it. But if it's not definite and they are sure he won't grow

out of it or have major problems until he does... she was really glad she

waited.

Good luck with everything.

>

> My son Lachlan is 10 weeks old and has BPP. In approximately 2 weeks, he

will have a " take down " surgery (he had NEC and perforated) and will also

have a G-tube placed. My husband and I are being encouraged to consider

having a nissen done in the same surgery.

>

> This past week, Lachlan had an Upper GI study and it was determined that

he has " moderate to severe " reflux. However, the study didn't allow for

him to be inclined and, from what I've read, the test isn't exactly

diagnostic anyway. Also, he doesn't appear to brady in relation to his feeds.

>

> The nissen seems to be more of a precautionary measure. But there are a

lot of complications that can occur!

>

> We're leaning toward having a pH probe test done this week and also

trying medication first. Currently, we only want Lachlan to have a laparoscopic

nissen if it's shown that he truly needs it.

>

> Advice, please? We don't want our sweet boy to aspirate and/or develop

pneumonia, but we also don't want him to have all the complications that can

occur.

>