Re: Autumn's home with her new g-tube-long

[Guest guest]

,

I just got chills reading your email. YOur first 24 hrs was just ike ours when

my son got his g-tube (the bed thing and all) however we had a lotof gaging as

well. Let me tell you, I was so uncomfortable with the fast feedings, or close

or amounts being high, because would get so uncomfotable. The bolce fed.

were bad. Stressful on me (how fast should i go, if he moves, etc) Then because

it appeared that he was having trouble with amounts, they put him on 1-2 hour

feeding withthe kangaroo pump, it was wonderful! It gave him a small amount

over a period of time and he could still play and walk around etc. We went

though all stages, couple hour feedings, all night feedings etc. and now he

drinks the formula from a cup! and I put Benecalorie (extra calories) through

the tube in a gravity feeding. What makes me want to write you is that I want

to shar esome news about PO feeding that you might not have been told.

Before had his g-tube(age 34mo) he ate VERY small amounts of food, but we

had gotten so far (as far as working with the occupational therapist with

textures and amounts) he actually was fianlly wanting to eat! But it still

wasnt enough. so we did the surgery. Then after we did, he regressed BIG time!

He started gaging on everything again, and didn't want to eat hardly anyting by

mouth. I was SOOOOO upset! We talked with many people including Dr.s and after

making sure that his stomach was emptying properly, we started stratigicly schd.

his meals. He was getting FULL from the feedings and didnt have any desire to

stuff himself. We did go back and have a little more therapy and worked out the

kinks, and now he does almost 1000 cal.of food and in addition drinks the

Resource by mouth! The tube feedings actaully (I think ) helped to stretch his

stomach and increased his activity (felt better, and had more energy), in turn

the activity increased his appitite. Having the

night feedings helped to regulate his sugar levels better and his disposition

was totally improved! He also slept better! longer! It will get better! The

doctors said that many, many children regress in many ways after going through

surgery. It's all a matter of finding the right amounts at the right time,

which I'm not going to say is easy, its very hard, but well worth the effort!!!

Although has only gained a pound since we had the g-tube put in over

a year ago (I think we have other issues at hand-frustrating!), it has been

great having it in. When he gets sick or refuses to eat, or take medication, we

just put it in the tube! I wish I could do that with my 2 year old! LOL!

My advise to you: 1) Onezies- I used them to keep the site clean and keep

little hands from playing with it! And its winter-extra warmth! ha!

2) Calmoseptine -its an ointment my surgen gave us to put around the

micky-button to act as a barrier from discharge and or granulatin tissue (both

can and most likely will occur, and can make it very itchy!) this stuff works

great!!!

Tell Autumn that says " Now you can drink and BURP through your tummy

like me! " Hahaha! Kids are great! Its really helped to know that there

are other kids out therelike him!

Best of luck! Hang in there!

Were praying for you and your family!

Missy ANne

anderkat3 wrote:

Well, finally it's over. Before I go on, thanks so much for all of

your thoughts and prayers, we really needed and appreciated them. It

took a while to decide what was best for Autum was this g-tube and I

do not regret it especially with her haveing and ng put in 1.5 weeks

before because she just woldn't eat or drink yet again. Also, I

don't know if I mentioned, she is 16 lbs and just between 29 3/4 and

30 inches now and 21.5 mos old. At 1 yr she weighed 15 lbs 11 oz

and was hanging in there on teh larger side of RSS, then it just

stopped and she gained a little, lost a little, then she yo-yoed and

got more and more unhealthy, always sick, didn't eat/drink until here

we are today almost a year later. SHe got her g-tube placed on

monday and the first 24 hours were horrible. She was in a lot of

pain and wouldn't move and when we shifted her she would cry. We

couldn't put her down the first night in her crib because she was so

upset so the nurse said if we sign a waiver (she is under 3 and needs

a crib according to hospital policy) they would remove the crib and

bring in a hospital bed for me to lay in with her, so finally we got

it all worked out and my husband and I could rest, it was almost 2 am

by then and the docs were going to round at 5! She was in a lot of

pain that night and I actually had to push the nurse for more than

tylenol, but finally we got a doctors order for something stronger

and Autumn calmed down and felt much better. I thought her pain

would never go away, she wouldn't even move on her own, then the next

night she suddenly was up, running around, laughing, climbing,

playing and we couldn't believe it! She is sore but otherwise doing

amazingly well! It was just those first 24 hours that were the

worst. We came home tuesday night and she just perked up being out

of the hospital. She also is tolerating feeds very well. WE do 4 oz

bolus 5 times a day and she even helps to hold the syringe for the

gravity feeds, she calls it her baba. So far so good. She is only

on 600 cals a day and they want at least 1000 but in no way is she

taking the near 400 extra needed by mouth. If you could believe it,

the docs had no idea what was going on with her feeds the morning

after surgery when they were about to begin. The nurse was frustrated

becasue they had changed the orders (plans) 3 times that morning and

she didn't know what was up. The docs first wanted a 2 oz bolus,

then 2 hours later 4 oz then 2 more hours later 6 oz! I said no

way! That is 12 oz in 4-5 hours! She is only 16 lbs! Then they

tried to only do pump feeding and wanted us home on continuous pumps

and I said what are they talking about, that was not the plan ever,

then finally they got hold of the nutritionist that spent 15 minutes

with me the night before designing a plan for Autumn and it got taken

care of. I will not go into detail, but this stay was another total

negative experience. My mother in law stayed with me one day and

couldn't believe it once she saw it for herself just how horrible and

confused these doctors and nurses were, no one knew what was going

on, no communication,it's amazing how many times i heard, " hmm, I

don't know " .

Anyways, at least we are home and she is doing well. The one problem

though is that originally we were doing this for supplimental feeds

at night, like 2 boluses or so of a couple hundred extra calories.

Now, she is solely bolused and food is extra calories. The gi

doctor's nurse is no help now and they are the ones who referred us

to the surgeon with a plan. she just said she'll see me in about a

week and we'll see then said she didn't even know why Autumn was on

peptamen jr and we need to change that because if it was working she

would have gained weight by now?!? I said it would have worked if

she actually would have taken enough!!!!!!!! Plus, she has been on it

for 10 or so months and they never had a problem with it before! OK,

I could go on and on but I am so frustrated with this lack of

communication with these docs I am about to lose it. Also, the

problem is now that Autumn stopped eating a couple weeks ago and got

an ng tube after a little and still doesn't eat much or drink much of

anything. She used to be an 'eater', not enough for good weight

gain, but she ate, now she barely wants to and when she does, I don't

want it messed up by her bolus feeds. I know she just had surgery

but she has done this for a while, and if she gets sick again or

doesnt' pick up her appetite, will she never solely eat food with

bolus feeds on the side? Will it be mainly tube feeding? because

this constant bolus feeds on top of nursing my baby and my other 2

kids are taking up every waking second. Am I making sense to you?

AHHH. I am done. Thanks for listening.

mom to Autumn 21.5 mos, Summer 4 mos, Ocean 3 yrs, Skye 7 yrs

[Guest guest]

,

got his gtube at 28 mo. He was eating small amounts by mouth

and we did not want to lose that. His feeding schedule was

approximately as follows after his tube (I can't remember amounts,

only times)

1. Pump off at 7 am. Breakfast at 8 am.

2. Pump back on at 9 am - slow feed.

3. Pump off at noon.

4. Lunch at 1 pm

5. Pump back on at 2 pm - slow feed.

6. Pump off at 5 pm

7. Dinner at 6 pm

8. Pump back on at 7 pm until 7 am - slow feed

Basically, he was on continuous feeds except we turned the pump off

1 hour before each meal and left it off for 1 hour to eat. Then

back on again. would eat small amounts at each meal, but we

really weren't looking for calories so we didn't care. We were

looking for chewing etc.

is now (age 5 1/2) off all daytime feeds. he is on the pump

from 8:30 pm to 6:30 am. We expect that when we see Dr H on 11/17

we will be cutting back the amount of formula he receives.

Good luck,

Judith, Steve, (RSS) and (non RSS) 5 1/2 year old twins

[Guest guest]

That is so cute what said! Thanks for all the advice.

autumn does tolerate her 4 oz feeds well although come to think of it

there is some concern that occationally, like once a day, she seems

uncomfortable during the end, and I try to figure out if she is fussy

from staying still or just not feeling well from it. The gravity

feed also flows slower at this time but i dont' know why there would

be no room because it has been over 3 hours since she has even eaten

or drank anything. I will bring this up to the gi doctor we are now

going to on monday. Autumn acts fine after feeds, never throws up or

anything. These bolus feeds are taking up soo much time. I bolus

her then hook her up to some bag for pressure relief (i believe just

for the first 2 weeks)for 5 minutes then clean it all up, then nurse

my baby, then cook lunch, then clean up, then bolus, then nurse then

diapers, then pick son up, then bolus, nurse, dinner...etc. it is

nonstop. It takes quite a few hours a day. I hope we can get a

better plan going monday because this is overwhelming. Thanks again

for your story and g-tube advice! Oh, and I definitly agree with how

great the g-tube is for meds! I have joke with my husband the same

thing about my 3 yr old son...because he never takes meds and Autumn

was the same way, but now I just put it in her g-tube! I still can't

figure out how to get them in my son!

mom to Autumn 21.5 mos RSS, Summer 4 mos SGA, Ocean 3.5

yrs, Skye 7 yrs

> Well, finally it's over. Before I go on, thanks so much for all of

> your thoughts and prayers, we really needed and appreciated them.

It

> took a while to decide what was best for Autum was this g-tube and

I

> do not regret it especially with her haveing and ng put in 1.5

weeks

> before because she just woldn't eat or drink yet again. Also, I

> don't know if I mentioned, she is 16 lbs and just between 29 3/4

and

> 30 inches now and 21.5 mos old. At 1 yr she weighed 15 lbs 11 oz

> and was hanging in there on teh larger side of RSS, then it just

> stopped and she gained a little, lost a little, then she yo-yoed

and

> got more and more unhealthy, always sick, didn't eat/drink until

here

> we are today almost a year later. SHe got her g-tube placed on

> monday and the first 24 hours were horrible. She was in a lot of

> pain and wouldn't move and when we shifted her she would cry. We

> couldn't put her down the first night in her crib because she was

so

> upset so the nurse said if we sign a waiver (she is under 3 and

needs

> a crib according to hospital policy) they would remove the crib and

> bring in a hospital bed for me to lay in with her, so finally we

got

> it all worked out and my husband and I could rest, it was almost 2

am

> by then and the docs were going to round at 5! She was in a lot of

> pain that night and I actually had to push the nurse for more than

> tylenol, but finally we got a doctors order for something stronger

> and Autumn calmed down and felt much better. I thought her pain

> would never go away, she wouldn't even move on her own, then the

next

> night she suddenly was up, running around, laughing, climbing,

> playing and we couldn't believe it! She is sore but otherwise doing

> amazingly well! It was just those first 24 hours that were the

> worst. We came home tuesday night and she just perked up being out

> of the hospital. She also is tolerating feeds very well. WE do 4 oz

> bolus 5 times a day and she even helps to hold the syringe for the

> gravity feeds, she calls it her baba. So far so good. She is only

> on 600 cals a day and they want at least 1000 but in no way is she

> taking the near 400 extra needed by mouth. If you could believe it,

> the docs had no idea what was going on with her feeds the morning

> after surgery when they were about to begin. The nurse was

frustrated

> becasue they had changed the orders (plans) 3 times that morning

and

> she didn't know what was up. The docs first wanted a 2 oz bolus,

> then 2 hours later 4 oz then 2 more hours later 6 oz! I said no

> way! That is 12 oz in 4-5 hours! She is only 16 lbs! Then they

> tried to only do pump feeding and wanted us home on continuous

pumps

> and I said what are they talking about, that was not the plan ever,

> then finally they got hold of the nutritionist that spent 15

minutes

> with me the night before designing a plan for Autumn and it got

taken

> care of. I will not go into detail, but this stay was another total

> negative experience. My mother in law stayed with me one day and

> couldn't believe it once she saw it for herself just how horrible

and

> confused these doctors and nurses were, no one knew what was going

> on, no communication,it's amazing how many times i heard, " hmm, I

> don't know " .

> Anyways, at least we are home and she is doing well. The one

problem

> though is that originally we were doing this for supplimental feeds

> at night, like 2 boluses or so of a couple hundred extra calories.

> Now, she is solely bolused and food is extra calories. The gi

> doctor's nurse is no help now and they are the ones who referred us

> to the surgeon with a plan. she just said she'll see me in about a

> week and we'll see then said she didn't even know why Autumn was on

> peptamen jr and we need to change that because if it was working

she

> would have gained weight by now?!? I said it would have worked if

> she actually would have taken enough!!!!!!!! Plus, she has been on

it

> for 10 or so months and they never had a problem with it before!

OK,

> I could go on and on but I am so frustrated with this lack of

> communication with these docs I am about to lose it. Also, the

> problem is now that Autumn stopped eating a couple weeks ago and

got

> an ng tube after a little and still doesn't eat much or drink much

of

> anything. She used to be an 'eater', not enough for good weight

> gain, but she ate, now she barely wants to and when she does, I

don't

> want it messed up by her bolus feeds. I know she just had surgery

> but she has done this for a while, and if she gets sick again or

> doesnt' pick up her appetite, will she never solely eat food with

> bolus feeds on the side? Will it be mainly tube feeding? because

> this constant bolus feeds on top of nursing my baby and my other 2

> kids are taking up every waking second. Am I making sense to you?

> AHHH. I am done. Thanks for listening.

>

>

> mom to Autumn 21.5 mos, Summer 4 mos, Ocean 3 yrs, Skye 7 yrs

>

>

>

>

>

>

>

>

[Guest guest]

Thanks so much for your e-mail. We are going to the gi on monday and

they are going to make a new plan for Autumn and try to encourage

more food. she used to liek to eat, the amounts were nothing great

but she did like foods (only her favorites, she is picky now) Right

now the bolus are every 3 hours and we are supposed to feed and offer

peptamen by mouth, then bolus after, but she doesn't drink and has

little interest in food so it is not working well. I hope this new

plan is better for her.

mom to Autumn 21.5 mos RSS, Summer 4 mos SGA, Ocean 3.5,

Skye 7

>

> ,

>

> got his gtube at 28 mo. He was eating small amounts by mouth

> and we did not want to lose that. His feeding schedule was

> approximately as follows after his tube (I can't remember amounts,

> only times)

>

> 1. Pump off at 7 am. Breakfast at 8 am.

> 2. Pump back on at 9 am - slow feed.

> 3. Pump off at noon.

> 4. Lunch at 1 pm

> 5. Pump back on at 2 pm - slow feed.

> 6. Pump off at 5 pm

> 7. Dinner at 6 pm

> 8. Pump back on at 7 pm until 7 am - slow feed

>

> Basically, he was on continuous feeds except we turned the pump off

> 1 hour before each meal and left it off for 1 hour to eat. Then

> back on again. would eat small amounts at each meal, but we

> really weren't looking for calories so we didn't care. We were

> looking for chewing etc.

>

> is now (age 5 1/2) off all daytime feeds. he is on the pump

> from 8:30 pm to 6:30 am. We expect that when we see Dr H on 11/17

> we will be cutting back the amount of formula he receives.

>

> Good luck,

>

> Judith, Steve, (RSS) and (non RSS) 5 1/2 year old

twins

>

[Guest guest]

,

I hope this works. I know you have been through a lot lately with Autumn

andSummer. By the way, I have that article and we have a new scanner at work.

I will get it to you today. I'll e-mail it privately with my work number so you

can let me know if you got it. If not, when we talk I will get your address and

mail it to you.

B

and Kelli

anderkat3 wrote:

Thanks so much for your e-mail. We are going to the gi on monday and

they are going to make a new plan for Autumn and try to encourage

more food. she used to liek to eat, the amounts were nothing great

but she did like foods (only her favorites, she is picky now) Right

now the bolus are every 3 hours and we are supposed to feed and offer

peptamen by mouth, then bolus after, but she doesn't drink and has

little interest in food so it is not working well. I hope this new

plan is better for her.

mom to Autumn 21.5 mos RSS, Summer 4 mos SGA, Ocean 3.5,

Skye 7

>

> ,

>

> got his gtube at 28 mo. He was eating small amounts by mouth

> and we did not want to lose that. His feeding schedule was

> approximately as follows after his tube (I can't remember amounts,

> only times)

>

> 1. Pump off at 7 am. Breakfast at 8 am.

> 2. Pump back on at 9 am - slow feed.

> 3. Pump off at noon.

> 4. Lunch at 1 pm

> 5. Pump back on at 2 pm - slow feed.

> 6. Pump off at 5 pm

> 7. Dinner at 6 pm

> 8. Pump back on at 7 pm until 7 am - slow feed

>

> Basically, he was on continuous feeds except we turned the pump off

> 1 hour before each meal and left it off for 1 hour to eat. Then

> back on again. would eat small amounts at each meal, but we

> really weren't looking for calories so we didn't care. We were

> looking for chewing etc.

>

> is now (age 5 1/2) off all daytime feeds. he is on the pump

> from 8:30 pm to 6:30 am. We expect that when we see Dr H on 11/17

> we will be cutting back the amount of formula he receives.

>

> Good luck,

>

> Judith, Steve, (RSS) and (non RSS) 5 1/2 year old

twins

>

[Guest guest]

,

I am so glad that the surgery is over for you guys and that Autumn is

up and feeling better now. I understand your frustration though. It

always seems like there is so much lack of communication each time

is in the hospital too. That makes the whole experience so

much more difficult....as if worrying about your child isn't enough.

I am always totally worn out after a hospital stay. But, I am glad

you guys are back home and I hope you can get the formula thing

worked out. I wouldn't change her formula if she is tolerating it.

You need to have a talk with her GI doctor and explain how well she

is tolerating this and that you don't want to change it because she

may not tolerate something different. I think that this formula is

pretty easily digested if I remember correctly from waht others have

said.

I hope she continues to do well. I am sure she will start eating

again soon. After a surgery like she has been through, she probably

doesn't feel much like eating. And, if she still refuses, maybe her

boluses are too much????

Take care,

Jodi R.

's mommy

>

> Well, finally it's over. Before I go on, thanks so much for all of

> your thoughts and prayers, we really needed and appreciated them.

It

> took a while to decide what was best for Autum was this g-tube and

I

> do not regret it especially with her haveing and ng put in 1.5

weeks

> before because she just woldn't eat or drink yet again. Also, I

> don't know if I mentioned, she is 16 lbs and just between 29 3/4

and

> 30 inches now and 21.5 mos old. At 1 yr she weighed 15 lbs 11 oz

> and was hanging in there on teh larger side of RSS, then it just

> stopped and she gained a little, lost a little, then she yo-yoed

and

> got more and more unhealthy, always sick, didn't eat/drink until

here

> we are today almost a year later. SHe got her g-tube placed on

> monday and the first 24 hours were horrible. She was in a lot of

> pain and wouldn't move and when we shifted her she would cry. We

> couldn't put her down the first night in her crib because she was

so

> upset so the nurse said if we sign a waiver (she is under 3 and

needs

> a crib according to hospital policy) they would remove the crib and

> bring in a hospital bed for me to lay in with her, so finally we

got

> it all worked out and my husband and I could rest, it was almost 2

am

> by then and the docs were going to round at 5! She was in a lot of

> pain that night and I actually had to push the nurse for more than

> tylenol, but finally we got a doctors order for something stronger

> and Autumn calmed down and felt much better. I thought her pain

> would never go away, she wouldn't even move on her own, then the

next

> night she suddenly was up, running around, laughing, climbing,

> playing and we couldn't believe it! She is sore but otherwise

doing

> amazingly well! It was just those first 24 hours that were the

> worst. We came home tuesday night and she just perked up being out

> of the hospital. She also is tolerating feeds very well. WE do 4

oz

> bolus 5 times a day and she even helps to hold the syringe for the

> gravity feeds, she calls it her baba. So far so good. She is only

> on 600 cals a day and they want at least 1000 but in no way is she

> taking the near 400 extra needed by mouth. If you could believe

it,

> the docs had no idea what was going on with her feeds the morning

> after surgery when they were about to begin. The nurse was

frustrated

> becasue they had changed the orders (plans) 3 times that morning

and

> she didn't know what was up. The docs first wanted a 2 oz bolus,

> then 2 hours later 4 oz then 2 more hours later 6 oz! I said no

> way! That is 12 oz in 4-5 hours! She is only 16 lbs! Then they

> tried to only do pump feeding and wanted us home on continuous

pumps

> and I said what are they talking about, that was not the plan ever,

> then finally they got hold of the nutritionist that spent 15

minutes

> with me the night before designing a plan for Autumn and it got

taken

> care of. I will not go into detail, but this stay was another

total

> negative experience. My mother in law stayed with me one day and

> couldn't believe it once she saw it for herself just how horrible

and

> confused these doctors and nurses were, no one knew what was going

> on, no communication,it's amazing how many times i heard, " hmm, I

> don't know " .

> Anyways, at least we are home and she is doing well. The one

problem

> though is that originally we were doing this for supplimental feeds

> at night, like 2 boluses or so of a couple hundred extra calories.

> Now, she is solely bolused and food is extra calories. The gi

> doctor's nurse is no help now and they are the ones who referred us

> to the surgeon with a plan. she just said she'll see me in about a

> week and we'll see then said she didn't even know why Autumn was on

> peptamen jr and we need to change that because if it was working

she

> would have gained weight by now?!? I said it would have worked if

> she actually would have taken enough!!!!!!!! Plus, she has been on

it

> for 10 or so months and they never had a problem with it before!

OK,

> I could go on and on but I am so frustrated with this lack of

> communication with these docs I am about to lose it. Also, the

> problem is now that Autumn stopped eating a couple weeks ago and

got

> an ng tube after a little and still doesn't eat much or drink much

of

> anything. She used to be an 'eater', not enough for good weight

> gain, but she ate, now she barely wants to and when she does, I

don't

> want it messed up by her bolus feeds. I know she just had surgery

> but she has done this for a while, and if she gets sick again or

> doesnt' pick up her appetite, will she never solely eat food with

> bolus feeds on the side? Will it be mainly tube feeding? because

> this constant bolus feeds on top of nursing my baby and my other 2

> kids are taking up every waking second. Am I making sense to you?

> AHHH. I am done. Thanks for listening.

>

>

> mom to Autumn 21.5 mos, Summer 4 mos, Ocean 3 yrs, Skye 7 yrs

>

[Guest guest]

Hi,

thanks! These hospitals stays are overwhelming. The good news is

Autumn is now eating! and drinking! I have now cut back on her

boluses to encourage it. She is doing so much better now all around.

She is extremely happy and playful, we were not expecting that so

soon. She sees gi tomorrow and I will should get this formula thing

straightened out.

> >

> > Well, finally it's over. Before I go on, thanks so much for all

of

> > your thoughts and prayers, we really needed and appreciated them.

> It

> > took a while to decide what was best for Autum was this g-tube

and

> I

> > do not regret it especially with her haveing and ng put in 1.5

> weeks

> > before because she just woldn't eat or drink yet again. Also, I

> > don't know if I mentioned, she is 16 lbs and just between 29 3/4

> and

> > 30 inches now and 21.5 mos old. At 1 yr she weighed 15 lbs 11

oz

> > and was hanging in there on teh larger side of RSS, then it just

> > stopped and she gained a little, lost a little, then she yo-yoed

> and

> > got more and more unhealthy, always sick, didn't eat/drink until

> here

> > we are today almost a year later. SHe got her g-tube placed on

> > monday and the first 24 hours were horrible. She was in a lot of

> > pain and wouldn't move and when we shifted her she would cry. We

> > couldn't put her down the first night in her crib because she

was

> so

> > upset so the nurse said if we sign a waiver (she is under 3 and

> needs

> > a crib according to hospital policy) they would remove the crib

and

> > bring in a hospital bed for me to lay in with her, so finally we

> got

> > it all worked out and my husband and I could rest, it was almost

2

> am

> > by then and the docs were going to round at 5! She was in a lot

of

> > pain that night and I actually had to push the nurse for more

than

> > tylenol, but finally we got a doctors order for something

stronger

> > and Autumn calmed down and felt much better. I thought her pain

> > would never go away, she wouldn't even move on her own, then the

> next

> > night she suddenly was up, running around, laughing, climbing,

> > playing and we couldn't believe it! She is sore but otherwise

> doing

> > amazingly well! It was just those first 24 hours that were the

> > worst. We came home tuesday night and she just perked up being

out

> > of the hospital. She also is tolerating feeds very well. WE do 4

> oz

> > bolus 5 times a day and she even helps to hold the syringe for

the

> > gravity feeds, she calls it her baba. So far so good. She is

only

> > on 600 cals a day and they want at least 1000 but in no way is

she

> > taking the near 400 extra needed by mouth. If you could believe

> it,

> > the docs had no idea what was going on with her feeds the morning

> > after surgery when they were about to begin. The nurse was

> frustrated

> > becasue they had changed the orders (plans) 3 times that morning

> and

> > she didn't know what was up. The docs first wanted a 2 oz bolus,

> > then 2 hours later 4 oz then 2 more hours later 6 oz! I said no

> > way! That is 12 oz in 4-5 hours! She is only 16 lbs! Then they

> > tried to only do pump feeding and wanted us home on continuous

> pumps

> > and I said what are they talking about, that was not the plan

ever,

> > then finally they got hold of the nutritionist that spent 15

> minutes

> > with me the night before designing a plan for Autumn and it got

> taken

> > care of. I will not go into detail, but this stay was another

> total

> > negative experience. My mother in law stayed with me one day and

> > couldn't believe it once she saw it for herself just how horrible

> and

> > confused these doctors and nurses were, no one knew what was

going

> > on, no communication,it's amazing how many times i heard, " hmm, I

> > don't know " .

> > Anyways, at least we are home and she is doing well. The one

> problem

> > though is that originally we were doing this for supplimental

feeds

> > at night, like 2 boluses or so of a couple hundred extra

calories.

> > Now, she is solely bolused and food is extra calories. The gi

> > doctor's nurse is no help now and they are the ones who referred

us

> > to the surgeon with a plan. she just said she'll see me in about

a

> > week and we'll see then said she didn't even know why Autumn was

on

> > peptamen jr and we need to change that because if it was working

> she

> > would have gained weight by now?!? I said it would have worked

if

> > she actually would have taken enough!!!!!!!! Plus, she has been

on

> it

> > for 10 or so months and they never had a problem with it before!

> OK,

> > I could go on and on but I am so frustrated with this lack of

> > communication with these docs I am about to lose it. Also, the

> > problem is now that Autumn stopped eating a couple weeks ago and

> got

> > an ng tube after a little and still doesn't eat much or drink

much

> of

> > anything. She used to be an 'eater', not enough for good weight

> > gain, but she ate, now she barely wants to and when she does, I

> don't

> > want it messed up by her bolus feeds. I know she just had

surgery

> > but she has done this for a while, and if she gets sick again or

> > doesnt' pick up her appetite, will she never solely eat food with

> > bolus feeds on the side? Will it be mainly tube feeding? because

> > this constant bolus feeds on top of nursing my baby and my other

2

> > kids are taking up every waking second. Am I making sense to

you?

> > AHHH. I am done. Thanks for listening.

> >

> >

> > mom to Autumn 21.5 mos, Summer 4 mos, Ocean 3 yrs, Skye 7 yrs

> >

>