Re: e-G-tube feedings and burp tube ?'s

May 14, 2004

We have had better luck with the Neocate. Her bowel movements

aren't as liquidy, so I think she will get better soon there, and her

phlegm production is less. We have learned to use the burp tube

frequently to get rid of the phlegm so her tummy can hold more

formula as well. Once some phlegm comes out she can eat more and

isn't hungry all the time. We still can't do much more than the 2nd

step of the " plan " to get to boluses. Whenever we try a bolus (which

is rarely) she immediately has lots of problems. So, we have chosen

to stay with feeds overnight and feeds for three hours on, two off,

during the daytime. She has gained three and a half pounds since

placement and is really doing so much better with her energy and

development since placement. It truly was the best thing we could

have ever done for her. Plus she is having another virus with a

fever and asthma symptoms AGAIN so I am glad we can avoid the

dehydration this time. I am hoping our next trip to Mayo will say it

is ok to try baby food as she really wants to eat my food. She

easily gags though and am worried it may not be best. I just hate

the thought of her not being able to eat orally. I will update you

on the issue after the Mayo trip. Thanks for inquiring how she is

doing and telling me what you have done.

> In a message dated 5/6/2004 12:29:46 PM Eastern Standard Time,

> honeybear50317@m... writes:

> They took her off Prilosec immediately when placing the tube as

well. I just

> want to make sure we are doing everything I can to help her.

> Darla, I just wanted to let you know that Chelsea was put on Zantac

for 6 mos

> when her gtube was placed, " just in case " . She has never really had

an issue

> with reflux, but her drs wanted to keep her acid production down

until her

> stoma healed and her body got used to the nissen.

> I am sorry to hear Zipporah is having such a hard time. I hope

things get

> better very soon, if they are not already=)

>

> e, Chelsea's mom(nonspecific mito)

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