Re: Should we get a feeding tube?

November 1, 2005

,

Dylan has had his g-tube since age 7 weeks, but I did foster a baby who was

orally fed until age 6 - 9 months. At first he had the g-tube placed simply

to vent his stomach for a period of time after a fundoplication was done for

reflux. But when he ate, he would have increasing respiratory distress,

wheezing, retractions and so on, so we switched to tube feedings. He did

not have a problem going to the tube feedings, he was not hungry so did not

feel deprived and he had other ways of meeting the need to suck. It was

very hard on his birth family. It was important to them that he eat

" normally " . As he aged into a toddler he did progress back to everything by

mouth. But the g-tube was needed for his respiratory health, he was simply

less " goopy " . I can only imagine that if he had had a trach that it would

have significantly decreased his secretions, one because of aspirating and

two because the body produces saliva in response to eating, so it increases

secretions.

In Carmen's case, I wonder if she would still be able to continue eating

finely chopped foods or soft foods, so she does not lose her eating skills,

but she has the g-tube for her water and additional calories that she is not

getting by mouth.

As far as post-op goes. IF they do a PEG it is no big deal, if they do

abdominal surgery it is painful - the key is pain management!!!!!!! I

couldn't even touch the crib when Dylan had his done at 7 weeks - horrible

pain mgt. When he had it redone at 18months, he had the drip that was put

in during surgery for the first 24 hours, then just regular pain med and he

did great. He was up and around in no time and was never miserable with it.

As far as one more medical thing to deal with - yes, you do have to have

your supplies for the button, but in some ways it actually makes life

simpler.

Kim

> Hi all,

>

> I am struggling with a decision as to whether to get a feeding tube

> for Carmen or not. She is 16 months old and has always eaten by

> mouth. She weighs 17 pounds and gains weight okay on her own. She

> is known to aspirate thin liquids and has had 2 hospitalization due

> to airway issues (wheezing, etc). She has a trach so I know when

> she aspirates and when she doesn't. She inconsistently aspirates

> thin liquids (sometimes she does sometimes she doesn't) and even

> those that are thickened to a honey-like or thicker texture. There

> have been rare occasions when I've gotten bigger items of food out

> of her trach (a tiny piece of cheese or something)--she does need

> lots of suctioning of her trach tube when she eats due to increased

> secretions. I met with pulminary yesterday and they are very

> reasonable about waiting to see how Carmen does without a tube for

> at least 4 more months. I'm nervous that I'm just waiting for the

> inevitable but quite frankly am scared to death. I don't want to

> put Carmen through another surgery and I also don't want to take

> away something that she does well (eating)--I also am dreading the

> healing process of the tube, what it will do to add to our chaos

> already (will it require more suctioning/problems/er visits, etc.)?

> Can anyone give me advice on this specifically regarding getting a

> feeding tube to late in life--and how the transition to one is? If

> your child has a trach and a feeding tube, do you think the tube

> helps or causes more issues with regard to suctioning, etc?

>

> Thanks for any help you can give me.

>

> , mom to Zach 4 years and Carmen 16 months (CHARGE)

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

November 1, 2005

Kim,

I have tears in my eyes right now because I knew as soon as I posted

on this site that someone would help me. This site has been a HUGE

support to be with Carmen's issues. Thank for such a quick note

back. Can you tell me what a PEG is as compared to abdominal

surgery? Also, we are planning a vacation in January so I wanted to

have something done before or after then and am note sure whether we

should wait or do it now. If we do something now, will the " rough

stage " be over by January, etc. These are the questions I keep

struggling with as well.

Thanks so much,

>

> > Hi all,

> >

> > I am struggling with a decision as to whether to get a feeding

tube

> > for Carmen or not. She is 16 months old and has always eaten by

> > mouth. She weighs 17 pounds and gains weight okay on her own.

She

> > is known to aspirate thin liquids and has had 2 hospitalization

due

> > to airway issues (wheezing, etc). She has a trach so I know when

> > she aspirates and when she doesn't. She inconsistently aspirates

> > thin liquids (sometimes she does sometimes she doesn't) and even

> > those that are thickened to a honey-like or thicker texture.

There

> > have been rare occasions when I've gotten bigger items of food

out

> > of her trach (a tiny piece of cheese or something)--she does need

> > lots of suctioning of her trach tube when she eats due to

increased

> > secretions. I met with pulminary yesterday and they are very

> > reasonable about waiting to see how Carmen does without a tube

for

> > at least 4 more months. I'm nervous that I'm just waiting for

the

> > inevitable but quite frankly am scared to death. I don't want to

> > put Carmen through another surgery and I also don't want to take

> > away something that she does well (eating)--I also am dreading

the

> > healing process of the tube, what it will do to add to our chaos

> > already (will it require more suctioning/problems/er visits,

etc.)?

> > Can anyone give me advice on this specifically regarding getting

a

> > feeding tube to late in life--and how the transition to one is?

If

> > your child has a trach and a feeding tube, do you think the tube

> > helps or causes more issues with regard to suctioning, etc?

> >

> > Thanks for any help you can give me.

> >

> > , mom to Zach 4 years and Carmen 16 months (CHARGE)

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

November 1, 2005

,

A PEG is when they put a g-button directly into the stomach without doing

the abdominal surgery required when a fundoplication is done. Would she be

having the fundoplication to prevent reflux as well?

Not to be too simplistic, but I think the rough time (surgical recovery) for

her is over within a week at most, more likely 3 days. For you, it will

depend on your comfort in learning one more thing - a piece of cake compared

to handling the trach. Then the rough spot of Carmen getting used to nothing

by mouth, there is no guarantee, but I do believe that our body's do know

what is best and that if she is healthy and nourished and has some ability

to still participate in meal times with certain foods, then the transition

will go well.

Because of her other respiratory complications, the trick may be getting it

done when she is WELL and two getting it done ASAP. Respiratory season is

upon us, and as little time in the hospital during the winter is advisable.

In Carmen's case you weigh the risk of her having further lung problems due

to aspiration and possibly reflux and ending up in the hospital for that

plus RSV exposure or scheduling the surgery and risking exposure to RSV, but

hopefully giving her a better chance with her resp issues.

On the wheezing, I think we have discussed this, but sometimes silent reflux

shows up as wheezing difficulties. Make sure that issue is addressed as

well. Sorry I cannot recall if it already has.

Kim

> Kim,

>

> I have tears in my eyes right now because I knew as soon as I posted

> on this site that someone would help me. This site has been a HUGE

> support to be with Carmen's issues. Thank for such a quick note

> back. Can you tell me what a PEG is as compared to abdominal

> surgery? Also, we are planning a vacation in January so I wanted to

> have something done before or after then and am note sure whether we

> should wait or do it now. If we do something now, will the " rough

> stage " be over by January, etc. These are the questions I keep

> struggling with as well.

>

> Thanks so much,

>

>>

>>> Hi all,

>>>

>>> I am struggling with a decision as to whether to get a feeding

> tube

>>> for Carmen or not. She is 16 months old and has always eaten by

>>> mouth. She weighs 17 pounds and gains weight okay on her own.

> She

>>> is known to aspirate thin liquids and has had 2 hospitalization

> due

>>> to airway issues (wheezing, etc). She has a trach so I know when

>>> she aspirates and when she doesn't. She inconsistently aspirates

>>> thin liquids (sometimes she does sometimes she doesn't) and even

>>> those that are thickened to a honey-like or thicker texture.

> There

>>> have been rare occasions when I've gotten bigger items of food

> out

>>> of her trach (a tiny piece of cheese or something)--she does need

>>> lots of suctioning of her trach tube when she eats due to

> increased

>>> secretions. I met with pulminary yesterday and they are very

>>> reasonable about waiting to see how Carmen does without a tube

> for

>>> at least 4 more months. I'm nervous that I'm just waiting for

> the

>>> inevitable but quite frankly am scared to death. I don't want to

>>> put Carmen through another surgery and I also don't want to take

>>> away something that she does well (eating)--I also am dreading

> the

>>> healing process of the tube, what it will do to add to our chaos

>>> already (will it require more suctioning/problems/er visits,

> etc.)?

>>> Can anyone give me advice on this specifically regarding getting

> a

>>> feeding tube to late in life--and how the transition to one is?

> If

>>> your child has a trach and a feeding tube, do you think the tube

>>> helps or causes more issues with regard to suctioning, etc?

>>>

>>> Thanks for any help you can give me.

>>>

>>> , mom to Zach 4 years and Carmen 16 months (CHARGE)

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c... or visit

>>> the web site at http://www.chargesyndrome.org - for CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca or email

>>> info@c... .

>>> 8th International

>>> CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>>> www.chargesyndrome.org or by calling 1-.

>>>

November 1, 2005

-

I think sooner is better -- for all the reasons Kim and others pointed out. For

our daughter, we agonized over the decision for months. It's one of my regrets.

If I knew then what I know now, I would have had the Gtube placed asap.

Perhaps this will help -- the Gtube is not an obstacle to oral feeding. Carmen

can continue to eat as much of whatever she is able to safely eat. But it does

allow you to get in the liquids and other unsafe things easily. The Gtube is a

helpful tool that you will appreciate once it's there. When we had the tube

removed, there were times I wished to have it back for meds and other unpleasant

things.

And the Gtube is not permanent. It can be used as little or as much as needed

and it can be removed whenever the time is right. You could put it in tomorrow,

use it only for liquids etc, continue oral feeding of safe foods, and remove it

when she is able to safely eat everything.

Gtube care is inconvenient, but it's not difficult. As Kim said, it's a breeze

compared to a trach. (My daughter never had a trach so I am not speaking from

experience here.)

Of course it's scary to add another contraption to your lives and put Carmen

thru another surgery, but this is to add a new tool to keep her healthy and

safe. It's a plus.

Now, how it might affect secretions, I can't help you with that one so I hope

that doesn't add any negatives that I'm unaware of.

Good luck in your decision making and in scheduling it all to go with your Jan

plans. These decisions are so hard !

Michele Westmaas

mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ

November 1, 2005

Michele,

How old was Aubrie when she got her tube and when did she get it

out? Did she also need a fundoplication? How do you keep your

child from pulling the feeding tube out? Thanks for your help.

>

> -

> I think sooner is better -- for all the reasons Kim and others

pointed out. For our daughter, we agonized over the decision for

months. It's one of my regrets. If I knew then what I know now, I

would have had the Gtube placed asap.

>

> Perhaps this will help -- the Gtube is not an obstacle to oral

feeding. Carmen can continue to eat as much of whatever she is able

to safely eat. But it does allow you to get in the liquids and

other unsafe things easily. The Gtube is a helpful tool that you

will appreciate once it's there. When we had the tube removed,

there were times I wished to have it back for meds and other

unpleasant things.

>

> And the Gtube is not permanent. It can be used as little or as

much as needed and it can be removed whenever the time is right.

You could put it in tomorrow, use it only for liquids etc, continue

oral feeding of safe foods, and remove it when she is able to safely

eat everything.

>

> Gtube care is inconvenient, but it's not difficult. As Kim said,

it's a breeze compared to a trach. (My daughter never had a trach

so I am not speaking from experience here.)

>

> Of course it's scary to add another contraption to your lives and

put Carmen thru another surgery, but this is to add a new tool to

keep her healthy and safe. It's a plus.

>

> Now, how it might affect secretions, I can't help you with that

one so I hope that doesn't add any negatives that I'm unaware of.

>

> Good luck in your decision making and in scheduling it all to go

with your Jan plans. These decisions are so hard !

>

> Michele Westmaas

> mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ

>

November 1, 2005

,

Hi there, my daughter has had a g tube since the age of 6 months. It has taken

so much stress OFF of us as we have never had to worry about her getting her

nutrition, growing, etc. This gave us time to worry about and work on other

things. It's so " not the end of the world " as some people believe. Kennedy can

even feed herself now; it's just never been a big deal to have the tube. I

think she will eat someday when she's ready to, until that time, it's a no

brainer for us: she gets all of her nutrients with no worries about aspiration

or lung damage and she is HEALTHY - probably one of the most healthiest fed kids

ever (we make her own diet with a special blender).

I also work with a little boy who started out as orally fed; he aspirated and

was quite sick very often with pneumonias. He finally got a g-tube and a nissen

fundoplication (for the reflux) and I can't even explain to you the difference

in his quality of life (not to mention his health). He was just sickly before

and eating took a lot out of him as well as him throwing it all up very often;

he seemed to pick up every bug that was going and was ill a lot. Now, he's a

big, burly, healthy boy who hardly ever gets sick. This doesn't mean he'll

never eat orally again, it's just the best for right now for his health.

Good luck with your decision - not an easy one but I just wanted to tell you

that it's SO not the end of the world to have a feeding tube. It takes a lot of

stress off of you...

Hugs from the north,

& Kennedy

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

November 1, 2005

,

Aidan's tube was a temporary one, stuck to his cheek, so no surgery

was required (the little devil is a real specialist in pulling it

out, though, so it means many times to put a new tube down again..)

So Im not sure if Im the right one to advice you, although his tube

thing was also because he was aspirating food into his lungs with no

coughing to correct it (as it's the natural reflex..)- Silent

aspiration, they called it..

Let me know anyway if you want to know more about this!

In any case, we're with you and Little Carmen is in our thoughts,

that's for sure!! Hopefully a temporary tube will make it too!!

Keep us posted!!

Love,

Pat xxxxx

Pat, mum to Aidan (CHARGE- almost 7 months old, 10 wks prem) - EIRE

>

> Hi all,

>

> I am struggling with a decision as to whether to get a feeding

tube

> for Carmen or not. She is 16 months old and has always eaten by

> mouth. She weighs 17 pounds and gains weight okay on her own.

She

> is known to aspirate thin liquids and has had 2 hospitalization

due

> to airway issues (wheezing, etc). She has a trach so I know when

> she aspirates and when she doesn't. She inconsistently aspirates

> thin liquids (sometimes she does sometimes she doesn't) and even

> those that are thickened to a honey-like or thicker texture.

There

> have been rare occasions when I've gotten bigger items of food out

> of her trach (a tiny piece of cheese or something)--she does need

> lots of suctioning of her trach tube when she eats due to

increased

> secretions. I met with pulminary yesterday and they are very

> reasonable about waiting to see how Carmen does without a tube for

> at least 4 more months. I'm nervous that I'm just waiting for the

> inevitable but quite frankly am scared to death. I don't want to

> put Carmen through another surgery and I also don't want to take

> away something that she does well (eating)--I also am dreading the

> healing process of the tube, what it will do to add to our chaos

> already (will it require more suctioning/problems/er visits,

etc.)?

> Can anyone give me advice on this specifically regarding getting a

> feeding tube to late in life--and how the transition to one is?

If

> your child has a trach and a feeding tube, do you think the tube

> helps or causes more issues with regard to suctioning, etc?

>

> Thanks for any help you can give me.

>

> , mom to Zach 4 years and Carmen 16 months (CHARGE)

>

November 1, 2005

-

had a Fundo and G-tube @ 0ne month. He had no suck/swallow and just

aspirated everything. He also had LOTS of secretions. We started trying food

by mouth @ 2 and he worked his way up from purred to solids. And eventual

feeding by mouth and removal of tube. The fundo took care of the aspiration

problem. And the G-tube got the nutrition in-but his respiratory problems

continued for many years. The secretions were soo bad at one point that the ER

doc thought his fundo had come undone and that the secretions were actually

formula. (His fundo has always stayed intact.)

I know that this will probably muddy the waters for you. But the fundo and

g-tube did not solve all of our repiratory problems. He would not have survived

without it. But the resp. issues took longer to sort of outgrow on their own.

We still do lots of meds for those issues and check in with Pulmo...

Good Luck!

Barbara-mom,(CHARGE)11,Rosie15