Re: Hi Everyone Im feeling so low.....

[Guest guest]

Hi,

Reading your email brought me to tears. I know you have done all you can

possible do. I feel the same way when cries and I don't know what's

wrong. I remember once when was in a lot of pain two weeks after his tendon

release surgery. I did all I could do, gave him a whirlpool bath, all his pain

killers but it did no good.

I picked him up and sat on the floor with him and prayed for him. I prayed so

that he could hear me praying and rocked back and forth. After about 10 minutes

I felt the sweetest peace come over us and he stopped crying. I just sat there

and held him for about an hour longer. Sometimes we get so upset and so

frustrated and our angels can feel that when we are around them. Good thing I

believe in prayer. I don't know what people do that dont.

Sometimes praying doesn't help and I don't understand it but I never gave up

.... I kept on praying and God kept on helping him little by little.

Is there any way you could get the funo sooner? That's a long time to wait and

I know that the wretching and reflux is very painful. Where do you live? We have

a childrens hospital here in MS and they could probably get it done next month.

Waiting can only make things worse for you and him. Wouldn't your doctor

consider it an emergency an go ahead and do it? You've probably already checked

on it but I wouldn't wait around until the doctor decides to do if that could be

the problem and everything else has been checked out.

didn't have a fund because he didn't show any reflux. I have to make

double sure he's sitting straight up when I feed him and I keep him sitting up

for a long time. I never lay him flat on his back.. He's always propped up. I

sure don't want to have another surgery but sometimes that's not in our hands.

How are his bowel movements?

I hope his gets to feeling better soon and and I will keep him in our

prayers. Don't give up...hang in there and give him a kiss from us!

Charlotte and

dairewendy wrote:

Our son Daire is now 4 and was the happiest smilies child I know, but

that has been replaced with pain, agitation, irritability and fear.

The fear is mine as I fear that I am losing him slowly to a fight I

cant win no matter how hard I try.

He is Peg fed since April 2005 and is increasingly vomiting since

July 2005 with no apparent reason theyve found so far. They have done

Ph Studys, Bariums, stomach emptying tests. They now plan to

reschedule the Nissen Fundo they planned to do with peg originally

but didnt feel necessary at the time reflux was only 5% of the time

and acc to them Losec mups were the answer.

My happy smiley boy with the determination and spirit of an army has

slowly slipped away from me and instead i have a son who is in pain

and discomfort a lot of the time, whos stomach spasms so loudly you

can hear it ft away, he is agitated irritable and miserable. His

smiles and happy times are so few we treasure them.

They sent me an app for a Gastroenterologist 19th Oct for a consult

then wait for him to decide whether Daire is suitable/well enough to

go under anesthesia and have an OGD done. When he has that done it

usually takes 6-8 weeks to get it written up. If this goes ahead then

its the wait for the operation possibly early 2007.

My biggest worry is will he be healthy or fit enough after all this

time to pull through it. We have decided to sign a DNR as we feel

that if resus was required Daire would possibly have suffered a

period when the brain was starved of oxygen and that would lessen his

quality of life as it is and so if this were to happen he would be

better off slipping away pacefully.

I dread waking up in the morning facing another day of his pain and

my frustration. I dread being the first one into his room in the

morning in case he has died over night. He is so used to vomiting

that he makes little or no sound. We've often found him lying in a

sea of vomit that has encrusted itself on to his clothes as hes being

lying in it for so long.

I am a mix of emotions: I feel anger that hes been left to suffer

like this. I feel so helpless at the fact I can do nothing to ease

his pain and discomfort. Despair & Isolation at the fact that nothing

seems to be done with the urgency I feel he deserves.

My problem with all of this is do I love him enough to let him go if

it did come to it?

Its so hard to fight a fight with an apponent you cant see.

Love Me Enough To Let Go

I found this poem which I think sums it up:

Your hearts are breaking - I know: I can tell

Because you're my parents and I know you so well

As hard as this is, there's something I need to say

I don't want to linger, don't beg me to stay

Keeping me here only gets in my way

Prevents me from being where I want to be

Out of this body and finally pain free

Living with God is my ultimate goal

By taking me home He is making me whole

The only thing holding me back, Mom and Dad

Is thinking of you and the good times we had

You fought for me when no one else could

Refused to give up when others told you you should

You packed a whole lifetime of love in (four) years

Gave me strength to handle all of my fears

Showered me with courage - you said - " It's a loan "

While secretly hiding tears of your own

You've done everything I needed - I couldn't ask for much more

Please love me enough to help me pass through that door

I know you are sad - and it doesn't seem fair

But the time has come to put me in God's care

Since I started the job I was sent here to do

And planted a seed now residing in you

I'm sure I can trust you to carry my load

Please love me enough - enough to let go

- Kathy McElhinny

To read more about please visit:

http://littleoddyssey.blogspot.com/

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Kathy,

Oh, to read your email, I can relate and my heart goes out to you,

as I have experienced it many times myself. I first just want you

to know that I wish I could give you a BIG hug! Second, I wish I

could give you a break and watch your son for you for awhile. It is

so hard when they cry and cry and can't tell us what's wrong. We go

thru the list and still can't come up with the answers.

Just some ideas to think of:

I truly believe they should be able to figure out why he's vomiting.

Can he eat by mouth at all? If he can, does he act differently than

when fed by tube? Have they tried different reflux meds? Have you

tried smaller portions? Could it be another med upsetting his

stomach? Could it be something else, seizures for example, making

him irritable or having headaches, etc?

Just some ideas to try for relief:

-Put up a hammock in your house (in a door frame) and swing him.

-Do you have a " buzzer " that can be clipped anywhere that gives

vibration to whatever you clip it to (hammock, pillow, etc)

-Have you tried music therapy thru Vital Sounds that has CD's

specially formulated for body regulation like " Mozart Modulation " .

These are not found in stores or catologues but gotten thru your OT

or I could give you the name of the place.

-Have you ever taken him to a cranial-sacral therapist or a

chiropractor? Often they can help and figure things out that

doctors can't. I don't know where we'd be without our cranial-

sacral therapist!

Of course it's the prayers that get us thru!

I want you to know we are thinking of you and wish so much we could

help and will pray very hard for you all. If I can think of

anything else I pass it on.

Take Care!

Joanie (Max 6yrs)

[Guest guest]

Kathy,

I thought of one more thing. We had a friends daughter that was very

sick and vomiting and was in the hospital and no could figure out why

as they were looking in the wrong place. She went home and ended up

going through the ER where they did blood test and found out she had a

tylenol overdose (given from when in hospital) and her kidneys were in

terrible shape. Have you had all the blood test done? CDC, med

levels, kidney/liver function? Just another thought.

Joanie

[Guest guest]

Kathy,

I saw the pictures of your son and I can't believe how

much he reminds me of my son. They favor each other

very much! My son is 2 1/2 and he has cerebral palsey

and pachygyria. I can't tell you that I know what you

are going thru because I don't. I have my own

problems with my son but nothing compared to yours. I

do understand the fear that you have inside and how

you are afraid to wake up every morning not knowing

what the day will hold. Whenever I am having a bad

day and I just can't get thru it, I think about

Philippians 4:6-7: Do not be anxious about anything,

but in everything, by prayer and petition, with

Thanksgiving, present your requests to God. And the

peace of God, which transcends all understanding, will

guard your hearts and your minds in Christ Jesus.

I'll be praying for you!

--- dairewendy wrote:

> Our son Daire is now 4 and was the happiest smilies

> child I know, but

> that has been replaced with pain, agitation,

> irritability and fear.

> The fear is mine as I fear that I am losing him

> slowly to a fight I

> cant win no matter how hard I try.

>

> He is Peg fed since April 2005 and is increasingly

> vomiting since

> July 2005 with no apparent reason theyve found so

> far. They have done

> Ph Studys, Bariums, stomach emptying tests. They now

> plan to

> reschedule the Nissen Fundo they planned to do with

> peg originally

> but didnt feel necessary at the time reflux was only

> 5% of the time

> and acc to them Losec mups were the answer.

>

> My happy smiley boy with the determination and

> spirit of an army has

> slowly slipped away from me and instead i have a son

> who is in pain

> and discomfort a lot of the time, whos stomach

> spasms so loudly you

> can hear it ft away, he is agitated irritable and

> miserable. His

> smiles and happy times are so few we treasure them.

>

> They sent me an app for a Gastroenterologist 19th

> Oct for a consult

> then wait for him to decide whether Daire is

> suitable/well enough to

> go under anesthesia and have an OGD done. When he

> has that done it

> usually takes 6-8 weeks to get it written up. If

> this goes ahead then

> its the wait for the operation possibly early 2007.

>

> My biggest worry is will he be healthy or fit enough

> after all this

> time to pull through it. We have decided to sign a

> DNR as we feel

> that if resus was required Daire would possibly have

> suffered a

> period when the brain was starved of oxygen and that

> would lessen his

> quality of life as it is and so if this were to

> happen he would be

> better off slipping away pacefully.

>

> I dread waking up in the morning facing another day

> of his pain and

> my frustration. I dread being the first one into his

> room in the

> morning in case he has died over night. He is so

> used to vomiting

> that he makes little or no sound. We've often found

> him lying in a

> sea of vomit that has encrusted itself on to his

> clothes as hes being

> lying in it for so long.

>

> I am a mix of emotions: I feel anger that hes been

> left to suffer

> like this. I feel so helpless at the fact I can do

> nothing to ease

> his pain and discomfort. Despair & Isolation at the

> fact that nothing

> seems to be done with the urgency I feel he

> deserves.

>

> My problem with all of this is do I love him enough

> to let him go if

> it did come to it?

> Its so hard to fight a fight with an apponent you

> cant see.

> Love Me Enough To Let Go

> I found this poem which I think sums it up:

>

>

> Your hearts are breaking - I know: I can tell

> Because you're my parents and I know you so well

> As hard as this is, there's something I need to say

> I don't want to linger, don't beg me to stay

>

> Keeping me here only gets in my way

> Prevents me from being where I want to be

> Out of this body and finally pain free

>

> Living with God is my ultimate goal

> By taking me home He is making me whole

> The only thing holding me back, Mom and Dad

> Is thinking of you and the good times we had

>

> You fought for me when no one else could

> Refused to give up when others told you you should

> You packed a whole lifetime of love in (four) years

> Gave me strength to handle all of my fears

>

> Showered me with courage - you said - " It's a loan "

> While secretly hiding tears of your own

> You've done everything I needed - I couldn't ask for

> much more

> Please love me enough to help me pass through that

> door

>

> I know you are sad - and it doesn't seem fair

> But the time has come to put me in God's care

> Since I started the job I was sent here to do

> And planted a seed now residing in you

>

> I'm sure I can trust you to carry my load

> Please love me enough - enough to let go

>

> - Kathy McElhinny

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear Kathy,

My heart goes out to you. Your family will be in my prayers. My son, Ethan has

hydrocephalus, schizencephaly and pmg. When he turned two he began with monthly

vomiting episodes that would leave him in the hospital for days. He ended up

with a feeding tube after a few months. It was miserable, and we had every test

done. We even had his VP shunt replaced to see if that was the problem. We

finally went to a GI doc who tried treating him for Cyclic Vomiting Syndrome. We

use a drug called periactin/ cyproheptadine. For the last three years he has

been symptom free. The drug has no real side effects, so it might be worth

trying just to see if it helps? Ask your docs.

Love,

Breit

---------------------------------

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[Guest guest]

I am so sorry to read about Daire's struggles. I will pray for your family and

hopefully there will be relief in sight. I am truly sorry.

Hi Everyone Im feeling so low.....

Our son Daire is now 4 and was the happiest smilies child I know, but

that has been replaced with pain, agitation, irritability and fear.

The fear is mine as I fear that I am losing him slowly to a fight I

cant win no matter how hard I try.

He is Peg fed since April 2005 and is increasingly vomiting since

July 2005 with no apparent reason theyve found so far. They have done

Ph Studys, Bariums, stomach emptying tests. They now plan to

reschedule the Nissen Fundo they planned to do with peg originally

but didnt feel necessary at the time reflux was only 5% of the time

and acc to them Losec mups were the answer.

My happy smiley boy with the determination and spirit of an army has

slowly slipped away from me and instead i have a son who is in pain

and discomfort a lot of the time, whos stomach spasms so loudly you

can hear it ft away, he is agitated irritable and miserable. His

smiles and happy times are so few we treasure them.

They sent me an app for a Gastroenterologist 19th Oct for a consult

then wait for him to decide whether Daire is suitable/well enough to

go under anesthesia and have an OGD done. When he has that done it

usually takes 6-8 weeks to get it written up. If this goes ahead then

its the wait for the operation possibly early 2007.

My biggest worry is will he be healthy or fit enough after all this

time to pull through it. We have decided to sign a DNR as we feel

that if resus was required Daire would possibly have suffered a

period when the brain was starved of oxygen and that would lessen his

quality of life as it is and so if this were to happen he would be

better off slipping away pacefully.

I dread waking up in the morning facing another day of his pain and

my frustration. I dread being the first one into his room in the

morning in case he has died over night. He is so used to vomiting

that he makes little or no sound. We've often found him lying in a

sea of vomit that has encrusted itself on to his clothes as hes being

lying in it for so long.

I am a mix of emotions: I feel anger that hes been left to suffer

like this. I feel so helpless at the fact I can do nothing to ease

his pain and discomfort. Despair & Isolation at the fact that nothing

seems to be done with the urgency I feel he deserves.

My problem with all of this is do I love him enough to let him go if

it did come to it?

Its so hard to fight a fight with an apponent you cant see.

Love Me Enough To Let Go

I found this poem which I think sums it up:

Your hearts are breaking - I know: I can tell

Because you're my parents and I know you so well

As hard as this is, there's something I need to say

I don't want to linger, don't beg me to stay

Keeping me here only gets in my way

Prevents me from being where I want to be

Out of this body and finally pain free

Living with God is my ultimate goal

By taking me home He is making me whole

The only thing holding me back, Mom and Dad

Is thinking of you and the good times we had

You fought for me when no one else could

Refused to give up when others told you you should

You packed a whole lifetime of love in (four) years

Gave me strength to handle all of my fears

Showered me with courage - you said - " It's a loan "

While secretly hiding tears of your own

You've done everything I needed - I couldn't ask for much more

Please love me enough to help me pass through that door

I know you are sad - and it doesn't seem fair

But the time has come to put me in God's care

Since I started the job I was sent here to do

And planted a seed now residing in you

I'm sure I can trust you to carry my load

Please love me enough - enough to let go

- Kathy McElhinny