Re: Autumn home from hospital...again..also, eating advice???????????????

[Guest guest]

- I'm so glad to hear Autumn is home. We've been thinking

about her lots. Hugs to you. Can I just say that recently Ian's

sickness triggered something that I always noticed with eating -

but, finally I put two and two together......Ian has always had

sensory issues with his food - but when he is sick - it's 100 times

worse. I always know when he is turning the corner because he will

first ask for Nutren (that's his supplement instead of a G-tube) and

then gradually go towards the food he likes. Maybe it will take

Autumn a little longer since she has an NG tube. I've had one

myself and they are very uncomfortable. It always made me vomit.

Anyway, as you know - when we have colds - nothing tastes good -

well, add sensory issues, lack of interest in eating to begin with -

and you have a much more difficult case. I would not be concerned

at this point. I think offering her foods that you know she likes

is the best start (even if it's something that I would get yelled at

suggesting to you LOL <like M & Ms> LOL). You have a lot going on and

if she's doing well with the tube feedings, her sugars and ketones

are good - then I would move on from there. Your instincts will

tell you if something is really going awry with her eating. And, if

that's the case - then, it might be time to sit down with a

nutritionist and/or a feeding specialist - just until Autumn gets

back up to speed. That's just my opinion mind you <grin>.

Our best to you. You are doing a fabulous job. Take Care.

- H

>

> Hi everyone. I hope all is well with everyone. Autumn came home

> from the hospital sunday, I hvae not been able to post earlier.

SHe

> is doing better adn is occationally now taking a little bit of

> food...a few bites a day at most, but will not drink anything

except

> some of a morning bottle. I suppliment her with tube feedings

> through her ng tube and it is helping her body recover and gain

> strength, today she is acting well. I give her 4 feeds a day,

> sometimes only 3 if she takes her morning bottle well. Her last

one

> is around 8 at night and she takes her morning bottle aroung 8 in

the

> morning then I give her 4 hours or so to eat/drink lunch etc ( she

> normally does after her morning bottle) but by 12 or 1230 she has

> still not eaten or had anything to drink so I give a 6 oz bolus of

> peptamen jr. She seems to have a really hard time regaining any

> interest in food and never wants to drink anything, which of

course

> is why she was given the ng tube last week, but I just don't know

> what it was about that cold that did this to her. She is getting

the

> tube removed on monday, the day she gets her g-tube. I need to

> somehow get her to want to eat....maybe the ng tube bothers her

but

> the thing is she is still acting the same about food as seh did

> before her hospital stay. I also just can't believe she wants

> nothing to drink..especially in teh mornings when she usually

wants

> something after her bottle. Not only doesnt' she want it but she

> will scream and if a cup is given to her, seh will throw it in

> anger. I guess I just have to reteach her to eat??? What is

going

> on.. I can't believe htis is just from a cold. MAybe once she

gets

> her g-tube and recovers she will show more interest. like I

> mentioned, I give her the last bolus at 8 pm and she has 12 hours

for

> hunger or thirst in the morning, then she drinks a little bottle

and

> refuses anything by lunchtime still...she is not full from

peptamin

> at that time... that is her normal routine. Any advice? We have

> backtracked a year with her.

>

> Thanks.

>

> mom to AUtumn RSS 21.5 mos, Summer, Ocean, Skye

>

[Guest guest]

hi katherine!!

i am so glad to hear that autumn is home and feeling better!!

jodie c

[Guest guest]

,

I agree with about the sensory issues. Whatever triggered

this episode with Autumn has caused her to react as she is. Then

add the uncomfortable ng tube and there is just no hope for now.

Once she has the surgery on Monday, things may get better. But it's

going to take awhile. Many kids who have this surgery and begin

tube feedings lose an interest in oral eating. But please don't

give up hope. Concentrate on her getting the nutrition she needs,

gaining weight, catching up. Do NOT stress over the eating thing.

She may not want to at all for some time to come. I've been there,

done that with Max. (Seems like I've been there/done that with

everything with Max!) As she gets older, she WILL have an

increasing interest in food. I promise. Just give yourself time to

adjust to the results of the surgery and the care she will need.

Offer food, but do not fret if she won't take it. Always make it

available. If you worry about her backsliding, you will make

yourself crazy. Just try to be thankful for each mouthful or drink

that she takes. It will get better over time.

Jodi Z