Re: Chat : Thoughts about Ian and G-Tube

November 28, 2005

,

Your reasons for considering the g-tube are sound ones and of a lot

of worth. But maybe you don't have to jump into that right now.

You see that Ian is eating more just from the Periactin. Maybe that

is the catalyst that he needed to begin to gain weight and stabilize

his blood sugars. It's great that he has a cold and is stable.

Imagine if this had happened a month ago!

I know I probably upset you with my private post about what I

thought Dr. H. was saying and asking for. You have NOT been

negligent at all. You have done everything you have known to do for

your son and look at how well he IS doing. It's taken a lot of work

and you've gotten him to where he is now. That is wonderful.

As for the tests, they are not painful, just inconvenient. IF that

is what Dr. H. is even talking about. An Upper GI involves Ian

drinking a special drink and then having x-rays every certain number

of minutes. Totally painless, but the drink doesn't appeal to

many. A gastric emptying study involves drinking another special

concoction and then Ian would have to lie on a table with a large x-

ray machine over him for about 2 hours. No pain, but not

comfortable to lie there for so long. Usually there are videos to

watch and eventually the kids fall asleep. It would not be good

medicine NOT to do some sort of GI study to see what is going on

with Ian's GI system. But I'm not a doctor and you don't really

know what is on Dr. H's mind until she and the GI doc talk.

Do NOT berate yourself. You are learning and doing and moving and

helping your son. Remember that. It's hard to wait, to wonder what

the right thing to do is, to question if that decision is the

correct one. Just give it time. It will all fall into place. I

promise.

Jodi Z

November 28, 2005

Hi. I just want to say that despite the issues Autumn has had with

getting her g-tube, she is doing better than she has in a long time.

Her cheeks were the last 'fat' on her body to go (our genes give

chunky cheeks despite weight for the most part) and they are back!

She has gained back weight now and is 17 lbs and almost 30 inches.

The weight gain seems to have made her appetite increase so it is

even better! I am not trying to encourage or say the g-tube is the

right way for you or anyone, I am just saying that with all she has

gone through..infection, problems wiht the hospital, gunk dripping,

button leaking, these problems are nothing compared to her getting

sick, being in the hospital, miserable , lethargic and growing more

and more unhealthy every day. She would be poked, pale, sickly,

crying and by the time she would 'recover' it would happen again.

MOst of her sickness was from her refusing calories and becoming sick

from starving herself and refusal to the point of vomiting all

liquids in her mouth, it was very scary.

Everything is calming down and the benefits of the g-tube are

becoming more noticable every day. I jsut wanted to write you this

because I know I written about a lot of problems we have had since

the surgery and not much of the positive. I am no longer in fear of

her next cold, which I used to be. Now when she refuses to eat or

drink, and she still does sometimes even on a good day, I just bolus

her and she keeps her energy and stays feeling good, otherwise it

could start a downward spiral. If I knew of the problems we would

encounter ahead of time, I still would have done it. Even my

husband, who had a really hard time with it, sees how much it has

done for her. She is so active and playful and full of energy, we

have not seen her like this in a long time. She is glowing. We had

tried periactin but it didn't work for her. WE gave it 10 mos and

nothing. I hope some of this is making sense. I usually post at

night when I am exhausted and when I reread my e-mails the next day,

they are really choppy and don't always come across right. Good luck

to you with your choice whatever it may be

mom to Autumn 22 mos, Summer 4.5 mos Ocean 3 yrs, Skye 7

yrs

>

> Well, I'm not going to write anything " pretty " this evening. LOL I

> don't have it in me. But, if you will allow me, I'd like to share

a

> few thoughts I've had about Ian's G-tube placement.

>

> I finally got a response from Dr. H yesterday. Short and sweet and

> albeit comforting to hear something, quite frustrating nonethless

> since it was very brief. However, I'm fortunate to have such

> beautiful, warm and overly generous people who were able to provide

> some feedback and " read between the lines " so-to-speak so that I

> could discern a bit more about what it is that I have to look

> forward to with respect to Ian getting a G-tube. Of course, this

> extra information, although quite informative and very useful, was

> still a bit overwhelming to hear. I finally felt that the decision

> to have a g-tube done for Ian was the right decision and now I may

> have more things to ponder about. More tests to rule things out -

> undoubtedly will be uncomfortable for Ian - and possibly even

> inconclusive based on what I've read from others' posts. So, if he

> does have reflux and/or delayed gastric emptying - does this make

me

> a negligent mother for not having these tests done sooner? Did I

> mention Ian is eating rather well again - much better than in

> previous weeks or months? Oh, it's probably another hunger stint

> he's on - he's only gained 1 pound in 5 months. So, the decision

is

> still the right one because when he gets sick it will help with

> blood sugars and eating issues. But, he has a pretty nasty cold

now

> and his blood sugars are great. Okay, so.....the questions

> continually encircle my mind, the debates make my head spin and

then

> the all out wars start to make me exhausted. I've been reading the

> posts about the new G-tubes that have been placed in other children

> recently. Problems at the hospital, tissue granulation (is that

> right?), leakage, seepage, cleaning, wiping, infections, concerns,

> worry, fear, frustration........OKAY. Now, is this what I was

> excited about? I thought I was going to make things easier because

> my child would get more calories, he would be healthier, and

> everyone could finally be happy and relaxed. I've been trying to

> hide those darn rose colored glasses since I was 21. They keep

> popping out of my drawer onto my head. I'm rambling. Then, I talk

> to someone who I know has way more issues than I do and I wonder -

> am I making more problems for all of us? Am I doing something to

> Ian that is based on a good decision - or out of fear? Is my

> judgement skewed from one hospital stay - that could have been

> avoided had I known a little more (or listened to the appropriate

> information I was given at the time)? Why is it that my questions

> are constantly whirling in my head and there never seems to be

> answers. I remember being here before. There have been many

> decisions in my life that could have been made differently, thereby

> creating a different path that I always thought would have changed

> my life in many ways. But, is this like that? Is this decision a

> life-altering moment? Whew. That's a loaded question. Time to

> sleep on it - again. Maybe tomorrow there will be more answers -

> hopefully, aimed at helping me answer mine.

> Thanks for listening.

> - H ()

>

November 29, 2005

Jodi - You DID NOT upset me with your post at all! My ramblings

last night are really thoughts that I've had for some time and I

finally decided to let them out of my head. Honestly, this

listserve has been a complete GOD send to me. I've learned more

about RSS and myself with an RSS child than I ever thought I would

learn. I know there is more to learn too and without everyone here

I would not be able to ponder the decisions that I have to face.

You DID NOT upset me - your responses to my posts and your private e-

mails are very encouraging, insightful, intelligent, and incredibly

helpful. You have so much to offer to the parents of RSS children

because you have been there - and without that knowledge, at least I

would be lost. I thank you from the bottom of my heart for your

knowledge and information. Is it hard to swallow sometimes? OF

COURSE! But, that's life and I wouldn't want it any other way. I

apologize if I upset you with my " vent " - I sometimes need to let it

out or it just brews. I copy my posts and save them on my computer

under a " journaling " file. I actually read these to my husband and

it helps him to understand better what I'm thinking - I think even

better than when we discuss things. He even made the comment last

night after I read it to him that " We will not make a final decision

until Dr. H sais it's the right thing " .

Jodi - with the whole G-tube thing - I think having the tests first

and " easing " into the tube decision is wise - I like what you said -

and who knows.....after the tests and after Dr. talks with

Dr. H - we may find out that the Periactin IS all that he needs for

now. We shall see. I'm back to thinking he's a " mild " case - but,

without fully understanding what his body is really doing - I guess

it will take more time to really know.

Thank you Jodi for everything. You help ALOT. I VERY MUCH

appreciate you and everyone else here so, so much.

- H

>

> ,

>

> Your reasons for considering the g-tube are sound ones and of a

lot

> of worth. But maybe you don't have to jump into that right now.

> You see that Ian is eating more just from the Periactin. Maybe

that

> is the catalyst that he needed to begin to gain weight and

stabilize

> his blood sugars. It's great that he has a cold and is stable.

> Imagine if this had happened a month ago!

>

> I know I probably upset you with my private post about what I

> thought Dr. H. was saying and asking for. You have NOT been

> negligent at all. You have done everything you have known to do

for

> your son and look at how well he IS doing. It's taken a lot of

work

> and you've gotten him to where he is now. That is wonderful.

>

> As for the tests, they are not painful, just inconvenient. IF

that

> is what Dr. H. is even talking about. An Upper GI involves Ian

> drinking a special drink and then having x-rays every certain

number

> of minutes. Totally painless, but the drink doesn't appeal to

> many. A gastric emptying study involves drinking another special

> concoction and then Ian would have to lie on a table with a large

x-

> ray machine over him for about 2 hours. No pain, but not

> comfortable to lie there for so long. Usually there are videos to

> watch and eventually the kids fall asleep. It would not be good

> medicine NOT to do some sort of GI study to see what is going on

> with Ian's GI system. But I'm not a doctor and you don't really

> know what is on Dr. H's mind until she and the GI doc talk.

>

> Do NOT berate yourself. You are learning and doing and moving and

> helping your son. Remember that. It's hard to wait, to wonder

what

> the right thing to do is, to question if that decision is the

> correct one. Just give it time. It will all fall into place. I

> promise.

>

> Jodi Z

>

November 29, 2005

- Thank you so much. Everything you say makes so much

sense and I appreciate learning more about all of this . I'm so

happy for you too that Autumn is doing so well. I'm very glad that

you are able to post information - it's so important to know

EVERYTHING - not just the " easy " stuff. I appreciate every bit of

knowledge - no matter how honest it is. I want to type more but I

just realized I have to get the boys dressed and out the door in 15

minutes for school!!! YIKES!

Thank you again. I'm very glad to know that Autumn seems happier.

Hugs to you.

- H

> >

> > Well, I'm not going to write anything " pretty " this evening.

LOL I

> > don't have it in me. But, if you will allow me, I'd like to

share

> a

> > few thoughts I've had about Ian's G-tube placement.

> >

> > I finally got a response from Dr. H yesterday. Short and sweet

and

> > albeit comforting to hear something, quite frustrating

nonethless

> > since it was very brief. However, I'm fortunate to have such

> > beautiful, warm and overly generous people who were able to

provide

> > some feedback and " read between the lines " so-to-speak so that I

> > could discern a bit more about what it is that I have to look

> > forward to with respect to Ian getting a G-tube. Of course,

this

> > extra information, although quite informative and very useful,

was

> > still a bit overwhelming to hear. I finally felt that the

decision

> > to have a g-tube done for Ian was the right decision and now I

may

> > have more things to ponder about. More tests to rule things

out -

> > undoubtedly will be uncomfortable for Ian - and possibly even

> > inconclusive based on what I've read from others' posts. So, if

he

> > does have reflux and/or delayed gastric emptying - does this

make

> me

> > a negligent mother for not having these tests done sooner? Did

I

> > mention Ian is eating rather well again - much better than in

> > previous weeks or months? Oh, it's probably another hunger

stint

> > he's on - he's only gained 1 pound in 5 months. So, the

decision

> is

> > still the right one because when he gets sick it will help with

> > blood sugars and eating issues. But, he has a pretty nasty cold

> now

> > and his blood sugars are great. Okay, so.....the questions

> > continually encircle my mind, the debates make my head spin and

> then

> > the all out wars start to make me exhausted. I've been reading

the

> > posts about the new G-tubes that have been placed in other

children

> > recently. Problems at the hospital, tissue granulation (is that

> > right?), leakage, seepage, cleaning, wiping, infections,

concerns,

> > worry, fear, frustration........OKAY. Now, is this what I was

> > excited about? I thought I was going to make things easier

because

> > my child would get more calories, he would be healthier, and

> > everyone could finally be happy and relaxed. I've been trying

to

> > hide those darn rose colored glasses since I was 21. They keep

> > popping out of my drawer onto my head. I'm rambling. Then, I

talk

> > to someone who I know has way more issues than I do and I

wonder -

> > am I making more problems for all of us? Am I doing something

to

> > Ian that is based on a good decision - or out of fear? Is my

> > judgement skewed from one hospital stay - that could have been

> > avoided had I known a little more (or listened to the

appropriate

> > information I was given at the time)? Why is it that my

questions

> > are constantly whirling in my head and there never seems to be

> > answers. I remember being here before. There have been many

> > decisions in my life that could have been made differently,

thereby

> > creating a different path that I always thought would have

changed

> > my life in many ways. But, is this like that? Is this decision

a

> > life-altering moment? Whew. That's a loaded question. Time to

> > sleep on it - again. Maybe tomorrow there will be more answers -

> > hopefully, aimed at helping me answer mine.

> > Thanks for listening.

> > - H ()

> >

>

November 29, 2005

I've been too busy to post lately, but wanted to at least give you a

quick response. 's gtube was inserted at age 2 yr 4 months. At

the time, he was about 15 pounds. Lost 2 pounds in the hospital. He

was a sickly looking little thing. Today at age 5 years and 10

months, he is almost 41 inches and 37 pounds. He is wearing size 4

clothes. He is only on 400 ml of formula and takes it all at night.

The surgery, despite the initial leakage etc to deal with, was

absolutely the correct decision.

BTW, actually had the triple procedure, which is the gtube,

fundoplication (surgical correction for reflux) and pyloriplasi (which

I can't spell lol. This helps to speed up digestion since he had

delayed gastric emptying).

Judith, Steve, (RSS) and (non RSS) 5 3/4 year old twins

November 29, 2005

Wow. I am so touched by this email. I know exactly how you feel. It's like a

roller coaster that you never get off! Speading out of control.......and just

when you think it might slow down enough for your mind to catch up.......WHOOSH!

You're off again!

Life is hard. Hard and painful and alot of times you just want to give up.

When I was 19 I tried to commit suicide. I was overwhelmed with the pressures

of having to grow up. Every time I feel overwhelmed now.......I look at what I

would have missed if I had succeeded. All of the wonderful friendships that

have come and gone and the few really good ones that stayed. The births of my

two children and all of my nieces and nephews. The difference I've made in all

the lives of the little ones I've cared for in my childcare......not to mention

all of the developmentally handicapped adults who trusted their lives to me.

Although I have had more than my share of heartache and dispair at 40 yrs. old,

I also am SO BLESSED to have met this man that loves me despite my faults, to

still have my mother, to have 3 siblings that mean so much to me.

. Email me about the blessings in your life. I would love to hear

about them too!!! I'm praying for God to bring you some peace. You are a

wonderful person and you help so many! Be good to yourself. You are LOVED!

Jeanie

advocate22003 wrote:

Well, I'm not going to write anything " pretty " this evening. LOL I

don't have it in me. But, if you will allow me, I'd like to share a

few thoughts I've had about Ian's G-tube placement.

I finally got a response from Dr. H yesterday. Short and sweet and

albeit comforting to hear something, quite frustrating nonethless

since it was very brief. However, I'm fortunate to have such

beautiful, warm and overly generous people who were able to provide

some feedback and " read between the lines " so-to-speak so that I

could discern a bit more about what it is that I have to look

forward to with respect to Ian getting a G-tube. Of course, this

extra information, although quite informative and very useful, was

still a bit overwhelming to hear. I finally felt that the decision

to have a g-tube done for Ian was the right decision and now I may

have more things to ponder about. More tests to rule things out -

undoubtedly will be uncomfortable for Ian - and possibly even

inconclusive based on what I've read from others' posts. So, if he

does have reflux and/or delayed gastric emptying - does this make me

a negligent mother for not having these tests done sooner? Did I

mention Ian is eating rather well again - much better than in

previous weeks or months? Oh, it's probably another hunger stint

he's on - he's only gained 1 pound in 5 months. So, the decision is

still the right one because when he gets sick it will help with

blood sugars and eating issues. But, he has a pretty nasty cold now

and his blood sugars are great. Okay, so.....the questions

continually encircle my mind, the debates make my head spin and then

the all out wars start to make me exhausted. I've been reading the

posts about the new G-tubes that have been placed in other children

recently. Problems at the hospital, tissue granulation (is that

right?), leakage, seepage, cleaning, wiping, infections, concerns,

worry, fear, frustration........OKAY. Now, is this what I was

excited about? I thought I was going to make things easier because

my child would get more calories, he would be healthier, and

everyone could finally be happy and relaxed. I've been trying to

hide those darn rose colored glasses since I was 21. They keep

popping out of my drawer onto my head. I'm rambling. Then, I talk

to someone who I know has way more issues than I do and I wonder -

am I making more problems for all of us? Am I doing something to

Ian that is based on a good decision - or out of fear? Is my

judgement skewed from one hospital stay - that could have been

avoided had I known a little more (or listened to the appropriate

information I was given at the time)? Why is it that my questions

are constantly whirling in my head and there never seems to be

answers. I remember being here before. There have been many

decisions in my life that could have been made differently, thereby

creating a different path that I always thought would have changed

my life in many ways. But, is this like that? Is this decision a

life-altering moment? Whew. That's a loaded question. Time to

sleep on it - again. Maybe tomorrow there will be more answers -

hopefully, aimed at helping me answer mine.

Thanks for listening.

- H ()

November 29, 2005

Judith - thanks so much for taking the time to post. I really

appreciate it. I hope things are well for you considering

everything you have going on. Every little bit of information

helps!

- H

>

> I've been too busy to post lately, but wanted to at least give you

a

> quick response. 's gtube was inserted at age 2 yr 4 months.

At

> the time, he was about 15 pounds. Lost 2 pounds in the hospital.

He

> was a sickly looking little thing. Today at age 5 years and 10

> months, he is almost 41 inches and 37 pounds. He is wearing size

4

> clothes. He is only on 400 ml of formula and takes it all at

night.

> The surgery, despite the initial leakage etc to deal with, was

> absolutely the correct decision.

>

> BTW, actually had the triple procedure, which is the gtube,

> fundoplication (surgical correction for reflux) and pyloriplasi

(which

> I can't spell lol. This helps to speed up digestion since he had

> delayed gastric emptying).

>

> Judith, Steve, (RSS) and (non RSS) 5 3/4 year old

twins

>

November 29, 2005

Jeanie - you are wise beyond your years. <grin> Thank you so much

for your kindness and beautiful thoughts. You couldn't have

replayed my scenario any better when describing the roller coaster.

I am so relieved and happy to know that you have found comfort in

your life. Sometimes it's difficult to share intimate details about

ourselves and I'm glad to know you felt comfortable enough to share

them here.

There is always peace when we take the time to see it's presence -

because it holds itself in many forms. It can be an emotion, a

quick thought, a laughing child, or even the presence of a person we

have never met. It's how we use these forms of peace around us that

creates our inner peace. Does that make sense? I try to find peace

in at least one situation every day. I too am blessed - but, I

won't bore you with the details <grin>.

I'm happy to know that my post touched you in a positive way. I

know that your response was very uplifting as well. Thank you so

much. You truly are a sweet and lovely individual. Aren't we lucky

to have so many wonderful people here?

Talk to you soon.

- H

> Well, I'm not going to write anything " pretty " this evening.

LOL I

> don't have it in me. But, if you will allow me, I'd like to share

a

> few thoughts I've had about Ian's G-tube placement.

>

> I finally got a response from Dr. H yesterday. Short and sweet

and

> albeit comforting to hear something, quite frustrating nonethless

> since it was very brief. However, I'm fortunate to have such

> beautiful, warm and overly generous people who were able to

provide

> some feedback and " read between the lines " so-to-speak so that I

> could discern a bit more about what it is that I have to look

> forward to with respect to Ian getting a G-tube. Of course, this

> extra information, although quite informative and very useful, was

> still a bit overwhelming to hear. I finally felt that the

decision

> to have a g-tube done for Ian was the right decision and now I may

> have more things to ponder about. More tests to rule things out -

> undoubtedly will be uncomfortable for Ian - and possibly even

> inconclusive based on what I've read from others' posts. So, if

he

> does have reflux and/or delayed gastric emptying - does this make

me

> a negligent mother for not having these tests done sooner? Did I

> mention Ian is eating rather well again - much better than in

> previous weeks or months? Oh, it's probably another hunger stint

> he's on - he's only gained 1 pound in 5 months. So, the decision

is

> still the right one because when he gets sick it will help with

> blood sugars and eating issues. But, he has a pretty nasty cold

now

> and his blood sugars are great. Okay, so.....the questions

> continually encircle my mind, the debates make my head spin and

then

> the all out wars start to make me exhausted. I've been reading

the

> posts about the new G-tubes that have been placed in other

children

> recently. Problems at the hospital, tissue granulation (is that

> right?), leakage, seepage, cleaning, wiping, infections, concerns,

> worry, fear, frustration........OKAY. Now, is this what I was

> excited about? I thought I was going to make things easier