Re: OT-really need to vent~

[Guest guest]

Oh Jen--big hugs!!!!!! I'm so sorry for you and little . :-(

On the bright side, you are now my HERO!! Kudos to you for knowing and

having the where-with-all to perform rescue breathing! You have proven

you're a GOOD MOMMA, so trust yourself and the decisions you make for

him. HUGS HUGS HUGS!!!!

>

> Hey all! I am a little frazzled to say the least and know I have a

lot of ears here to vent to! stopped breathing back in

August and I gave him so rescue breaths. We spent 5 days in the

hospital were many things were ruled out. They assumed it was his

reflux and changed his meds. He did this several other times in the 5

days we were there. It was SO scary, but we thought we had it figured

out.

>

> Then in the middle of Sept. it happened again. I was holding him,

so I was able to do the same thing again. Another night in the

hospital were they said the med. just wasn't working yet.

>

> On Tues. he did it again. This time I was home alone. We are still

in the hospital. They FINALLY did a swallow study which they had

mentioned every time and found that he aspirated food no matter the

thickness. They immediately thought G-tube, a tube in their stomach

that give them nutrition. We were a little rushed and didn't feel

good about it. After finally getting our million doctors together we

concluded that we are going to do an NJ-tube. This will go from his

nose down his stomach and into the small bowel. This will allow him

to get feed and not reflux what he eats. This is more temporary and

will probably be the death of us. A 10 1/2 month old on continuous

feeds attached to a wire is not a good proposition. Our hope is that

the less invasive method will work. We will do another swallow study

in 3 weeks after speech and oral therapy to see if the healing and him

getting over a cold will help his study improve. If not we will have

to go the more invasive route of a semi-permanent J-tube which goes

into their stomach. He would then still get therapy to improve oral

skills.

>

> Everything has been such a surprise. Because this started recently

they are thinking he just started aspirating, so they are not 00% sure

the cause. I feel the worst I have yet. loved his bottle, and

because of his delays it was one of the only words he would respond

to. We would tell him that we were getting his bottle and he was so

happy. Now we have to take it away from him. Then in 3 weeks tease

him by letting him take a few sucks to testing his swallowing. I

don't know if I can do that to him, but I don't have much of a choice.

I know others go through so much more, but has been so tough

through everything he has been dealt and I just feel things keep

piling on, and I am going to go crazy!!!

>

> Just keep in your thought and prayers please! I wanted to

thank you all for being so supportive. I thought of all of you when

we were making our decision. It is always best to try the less

invasive because you can always go forward. It is much harder to go

back! Hope to be posting here soon, but I will have a very busy next

3 weeks on inpatient rehab about 40 minutes from home!

>

> Talk to you all very soon,

>

>

> 11/19/04 " I hope I am home for Halloween and my birthday! "

>

>

>

[Guest guest]

Big Hugs to you, your husband and little ! know that your

family will be in our daily prayers. Keep us posted!!

Kathleen

mom to 8/28/04 fab 10/7

>

> Hey all! I am a little frazzled to say the least and know I have

a lot of ears here to vent to! stopped breathing back in

August and I gave him so rescue breaths. We spent 5 days in the

hospital were many things were ruled out. They assumed it was his

reflux and changed his meds. He did this several other times in the

5 days we were there. It was SO scary, but we thought we had it

figured out.

>

> Then in the middle of Sept. it happened again. I was holding

him, so I was able to do the same thing again. Another night in the

hospital were they said the med. just wasn't working yet.

>

> On Tues. he did it again. This time I was home alone. We are

still in the hospital. They FINALLY did a swallow study which they

had mentioned every time and found that he aspirated food no matter

the thickness. They immediately thought G-tube, a tube in their

stomach that give them nutrition. We were a little rushed and

didn't feel good about it. After finally getting our million

doctors together we concluded that we are going to do an NJ-tube.

This will go from his nose down his stomach and into the small

bowel. This will allow him to get feed and not reflux what he

eats. This is more temporary and will probably be the death of us.

A 10 1/2 month old on continuous feeds attached to a wire is not a

good proposition. Our hope is that the less invasive method will

work. We will do another swallow study in 3 weeks after speech and

oral therapy to see if the healing and him getting over a cold will

help his study improve. If not we will have to go the more invasive

route of a semi-permanent J-tube which goes into their stomach. He

would then still get therapy to improve oral skills.

>

> Everything has been such a surprise. Because this started

recently they are thinking he just started aspirating, so they are

not 00% sure the cause. I feel the worst I have yet. loved

his bottle, and because of his delays it was one of the only words

he would respond to. We would tell him that we were getting his

bottle and he was so happy. Now we have to take it away from him.

Then in 3 weeks tease him by letting him take a few sucks to testing

his swallowing. I don't know if I can do that to him, but I don't

have much of a choice. I know others go through so much more, but

has been so tough through everything he has been dealt and I

just feel things keep piling on, and I am going to go crazy!!!

>

> Just keep in your thought and prayers please! I wanted to

thank you all for being so supportive. I thought of all of you when

we were making our decision. It is always best to try the less

invasive because you can always go forward. It is much harder to go

back! Hope to be posting here soon, but I will have a very busy

next 3 weeks on inpatient rehab about 40 minutes from home!

>

> Talk to you all very soon,

>

>

> 11/19/04 " I hope I am home for Halloween and my birthday! " :

(

>

>

>

[Guest guest]

Jen, so sorry to hear this news!! Our thoughts are with you and that

little trooper of yours!! I can't even imagine what a scare those

episodes were for you!!!!!!!!!!!!!

Just try to keep in mind that he will remember none of this. Not that

that makes this any easier on you, we really feel for you hon!

How long do they think he will need this feeding tube? Could he take

a soother with it? Don't even know if he does take one but it might

be a bit of a substitute for his bottle.

Please let us know when you find out more.

Big hugs from us and hang in there you guys will get through this!

& Grace

>

> Hey all! I am a little frazzled to say the least and know I have a

lot of ears here to vent to! stopped breathing back in

August and I gave him so rescue breaths. We spent 5 days in the

hospital were many things were ruled out. They assumed it was his

reflux and changed his meds. He did this several other times in the

5 days we were there. It was SO scary, but we thought we had it

figured out.

>

> Then in the middle of Sept. it happened again. I was holding him,

so I was able to do the same thing again. Another night in the

hospital were they said the med. just wasn't working yet.

>

> On Tues. he did it again. This time I was home alone. We are

still in the hospital. They FINALLY did a swallow study which they

had mentioned every time and found that he aspirated food no matter

the thickness. They immediately thought G-tube, a tube in their

stomach that give them nutrition. We were a little rushed and didn't

feel good about it. After finally getting our million doctors

together we concluded that we are going to do an NJ-tube. This will

go from his nose down his stomach and into the small bowel. This

will allow him to get feed and not reflux what he eats. This is more

temporary and will probably be the death of us. A 10 1/2 month old

on continuous feeds attached to a wire is not a good proposition.

Our hope is that the less invasive method will work. We will do

another swallow study in 3 weeks after speech and oral therapy to see

if the healing and him getting over a cold will help his study

improve. If not we will have to go the more invasive route of a semi-

permanent J-tube which goes into their stomach. He would then still

get therapy to improve oral skills.

>

> Everything has been such a surprise. Because this started recently

they are thinking he just started aspirating, so they are not 00%

sure the cause. I feel the worst I have yet. loved his

bottle, and because of his delays it was one of the only words he

would respond to. We would tell him that we were getting his bottle

and he was so happy. Now we have to take it away from him. Then in

3 weeks tease him by letting him take a few sucks to testing his

swallowing. I don't know if I can do that to him, but I don't have

much of a choice. I know others go through so much more, but

has been so tough through everything he has been dealt and I just

feel things keep piling on, and I am going to go crazy!!!

>

> Just keep in your thought and prayers please! I wanted to

thank you all for being so supportive. I thought of all of you when

we were making our decision. It is always best to try the less

invasive because you can always go forward. It is much harder to go

back! Hope to be posting here soon, but I will have a very busy next

3 weeks on inpatient rehab about 40 minutes from home!

>

> Talk to you all very soon,

>

>

> 11/19/04 " I hope I am home for Halloween and my birthday! "

>

>

>

[Guest guest]

you're all in our prayers over here!

s.

OT-really need to vent~

Hey all! I am a little frazzled to say the least and know I have a lot of ears

here to vent to! stopped breathing back in August and I gave him so

rescue breaths. We spent 5 days in the hospital were many things were ruled

out. They assumed it was his reflux and changed his meds. He did this several

other times in the 5 days we were there. It was SO scary, but we thought we had

it figured out.

Then in the middle of Sept. it happened again. I was holding him, so I was

able to do the same thing again. Another night in the hospital were they said

the med. just wasn't working yet.

On Tues. he did it again. This time I was home alone. We are still in the

hospital. They FINALLY did a swallow study which they had mentioned every time

and found that he aspirated food no matter the thickness. They immediately

thought G-tube, a tube in their stomach that give them nutrition. We were a

little rushed and didn't feel good about it. After finally getting our million

doctors together we concluded that we are going to do an NJ-tube. This will go

from his nose down his stomach and into the small bowel. This will allow him to

get feed and not reflux what he eats. This is more temporary and will probably

be the death of us. A 10 1/2 month old on continuous feeds attached to a wire

is not a good proposition. Our hope is that the less invasive method will work.

We will do another swallow study in 3 weeks after speech and oral therapy to see

if the healing and him getting over a cold will help his study improve. If not

we will have to go the more invasive route of a semi-permanent J-tube which goes

into their stomach. He would then still get therapy to improve oral skills.

Everything has been such a surprise. Because this started recently they are

thinking he just started aspirating, so they are not 00% sure the cause. I feel

the worst I have yet. loved his bottle, and because of his delays it was

one of the only words he would respond to. We would tell him that we were

getting his bottle and he was so happy. Now we have to take it away from him.

Then in 3 weeks tease him by letting him take a few sucks to testing his

swallowing. I don't know if I can do that to him, but I don't have much of a

choice. I know others go through so much more, but has been so tough

through everything he has been dealt and I just feel things keep piling on, and

I am going to go crazy!!!

Just keep in your thought and prayers please! I wanted to thank you all

for being so supportive. I thought of all of you when we were making our

decision. It is always best to try the less invasive because you can always go

forward. It is much harder to go back! Hope to be posting here soon, but I

will have a very busy next 3 weeks on inpatient rehab about 40 minutes from

home!

Talk to you all very soon,

11/19/04 " I hope I am home for Halloween and my birthday! "

[Guest guest]

,

I'm so sorry you're venturing in to territory I've been in for the past 20 mos.

It is very scary when your child stops breathing and even worse when you realize

that the 'normal' way of eating isn't going to work for your son for a time.

Please know that I'm here if you need to talk and unload. Also know that in the

end having a g-tube is usually much easier on you and your son if the problems

don't resolve themselves. However, if you hear them talking about a

fundoplication, commonly known as a fundo or a nissen, again take your time on

that one. You CAN get a g-tube without a fundo no matter what your Dr's might

say. In addition I'd encourage you not to make that decision until all other

measures have been tried like meds. There are several specialists in this field

who use protocol for meds that most other Dr's won't and it is a lifesaving

thing for those kids who can use them. Also, in addition to a swallow study and

before they do anything aside from a g-tube, demand an emptying study. If your

child has difficulty emptying his stomach it will make reflux worse. Okay, I'm

wandering. I'll stop now. Again, feel free to contact me on or off list if you

need an ear or a shoulder or even some BTDT advice. There's also a feeding

group at yahoo that is wonderful. Lots of Moms who have been there as well. If

you want that link please let me know.

Chris

*Mom to , bi cf, severe GERD, gastroparesis, g-tube, fundo, speech delays,

dysphagia and other feeding issues*

OT-really need to vent~

Hey all! I am a little frazzled to say the least and know I have a lot of

ears here to vent to! stopped breathing back in August and I gave

him so rescue breaths. We spent 5 days in the hospital were many things were

ruled out. They assumed it was his reflux and changed his meds. He did this

several other times in the 5 days we were there. It was SO scary, but we

thought we had it figured out.

Then in the middle of Sept. it happened again. I was holding him, so I was

able to do the same thing again. Another night in the hospital were they said

the med. just wasn't working yet.

On Tues. he did it again. This time I was home alone. We are still in the

hospital. They FINALLY did a swallow study which they had mentioned every time

and found that he aspirated food no matter the thickness. They immediately

thought G-tube, a tube in their stomach that give them nutrition. We were a

little rushed and didn't feel good about it. After finally getting our million

doctors together we concluded that we are going to do an NJ-tube. This will go

from his nose down his stomach and into the small bowel. This will allow him to

get feed and not reflux what he eats. This is more temporary and will probably

be the death of us. A 10 1/2 month old on continuous feeds attached to a wire

is not a good proposition. Our hope is that the less invasive method will work.

We will do another swallow study in 3 weeks after speech and oral therapy to see

if the healing and him getting over a cold will help his study improve. If not

we will have to go the more invasive route of a semi-permanent J-tube which goes

into their stomach. He would then still get therapy to improve oral skills.

Everything has been such a surprise. Because this started recently they are

thinking he just started aspirating, so they are not 00% sure the cause. I feel

the worst I have yet. loved his bottle, and because of his delays it was

one of the only words he would respond to. We would tell him that we were

getting his bottle and he was so happy. Now we have to take it away from him.

Then in 3 weeks tease him by letting him take a few sucks to testing his

swallowing. I don't know if I can do that to him, but I don't have much of a

choice. I know others go through so much more, but has been so tough

through everything he has been dealt and I just feel things keep piling on, and

I am going to go crazy!!!

Just keep in your thought and prayers please! I wanted to thank you

all for being so supportive. I thought of all of you when we were making our

decision. It is always best to try the less invasive because you can always go

forward. It is much harder to go back! Hope to be posting here soon, but I

will have a very busy next 3 weeks on inpatient rehab about 40 minutes from

home!

Talk to you all very soon,

11/19/04 " I hope I am home for Halloween and my birthday! "

[Guest guest]

,

It's good to hear that your Dr is willing to try everything before the nissen.

My daughter had silent reflux also but from birth so she chose not to suck to

eat as it caused pain. It's been a long road but prevacid and zantac were our

friends for a long time. Now she's just on prevacid and I won't let them take

that away from her any time soon! We've long believed that if we knew more

before we went in for the surgical consultation (our daughter was in the NICU at

the time) we wouldn't have even let them consider the fundo until they'd done

everything else first. As it was they did the surgery and although we'd only

given the consent for the g-tube hoping to be able to do some research before

they did the fundo they went ahead and did it anyway. *sigh* Fundo surgeries

often cause the vagus nerve to be injured causing gastroparesis. Oh joy.

Anyway, keep us updated and let me know how things are going.

Chris

OT-really need to vent~

Hey all! I am a little frazzled to say the least and know I have a lot of

ears here to vent to! stopped breathing back in August and I gave

him so rescue breaths. We spent 5 days in the hospital were many things were

ruled out. They assumed it was his reflux and changed his meds. He did this

several other times in the 5 days we were there. It was SO scary, but we

thought we had it figured out.

Then in the middle of Sept. it happened again. I was holding him, so I was

able to do the same thing again. Another night in the hospital were they said

the med. just wasn't working yet.

On Tues. he did it again. This time I was home alone. We are still in the

hospital. They FINALLY did a swallow study which they had mentioned every time

and found that he aspirated food no matter the thickness. They immediately

thought G-tube, a tube in their stomach that give them nutrition. We were a

little rushed and didn't feel good about it. After finally getting our million

doctors together we concluded that we are going to do an NJ-tube. This will go

from his nose down his stomach and into the small bowel. This will allow him to

get feed and not reflux what he eats. This is more temporary and will probably

be the death of us. A 10 1/2 month old on continuous feeds attached to a wire

is not a good proposition. Our hope is that the less invasive method will work.

We will do another swallow study in 3 weeks after speech and oral therapy to see

if the healing and him getting over a cold will help his study improve. If not

we will have to go the more invasive route of a semi-permanent J-tube which goes

into their stomach. He would then still get therapy to improve oral skills.

Everything has been such a surprise. Because this started recently they are

thinking he just started aspirating, so they are not 00% sure the cause. I feel

the worst I have yet. loved his bottle, and because of his delays it was

one of the only words he would respond to. We would tell him that we were

getting his bottle and he was so happy. Now we have to take it away from him.

Then in 3 weeks tease him by letting him take a few sucks to testing his

swallowing. I don't know if I can do that to him, but I don't have much of a

choice. I know others go through so much more, but has been so tough

through everything he has been dealt and I just feel things keep piling on, and

I am going to go crazy!!!

Just keep in your thought and prayers please! I wanted to thank you

all for being so supportive. I thought of all of you when we were making our

decision. It is always best to try the less invasive because you can always go

forward. It is much harder to go back! Hope to be posting here soon, but I

will have a very busy next 3 weeks on inpatient rehab about 40 minutes from

home!

Talk to you all very soon,

11/19/04 " I hope I am home for Halloween and my birthday! "

[Guest guest]

Thanks everyone! Your advice and prayers have helped. Just a quick update.

is getting 1/2 oz. of water 3-4 times a day because my husband didn't

want him to forget how to eat. Also, they clipped his tongue, so when they do

another swallow study we didn't want there to be another degree of error. We

have worked so hard on a soothie and it works for a little while, but he isn't

fooled!

His vocal cords and area around them are very swollen and he has a cold. We

have decided to wait until this gets better before making any other decisions.

We will try another swallow study in a week or so. We are going to request that

they try different positions with him while he drinks or eats (not on his head

or anything). Ok that was silly, but I am tired Anyway, they have talked about

a nissen or a gj-tube to try and eliminate aspiration and reflux. Right now, we

are set on trying this out for a while. The only problem is they can only get

the tube in one nostril so his irritation will only increase. They have said

they could only do a g-tube, but the risk would be increased reflux. I believe

our GI is leaning toward only the g-tube though.

We are hoping and praying this is just an inflammation thing and that the reflux

is causing problems. We didn't have any idea his reflux was causing so much

problem because he was silently refluxing. With all his other issues and

therapies this sort of took a back seat. Now with us more focused on it, we are

hoping to remedy the problem.

It is really amazing how tough kids are. This is testing 's happy

disposition and he is getting rather angry with all the nurses and doctors, but

he usually recovers after an hour or so.

Thanks again! Oh, and we have an eye appt. tomorrow for his glasses. We are

hoping to see some improvement there! I plan to check out the feeding group as

soon as I have time! Thank you all so much!

, , and

He s

OT-really need to vent~

Hey all! I am a little frazzled to say the least and know I have a lot of

ears here to vent to! stopped breathing back in August and I gave

him so rescue breaths. We spent 5 days in the hospital were many things were

ruled out. They assumed it was his reflux and changed his meds. He did this

several other times in the 5 days we were there. It was SO scary, but we

thought we had it figured out.

Then in the middle of Sept. it happened again. I was holding him, so I was

able to do the same thing again. Another night in the hospital were they said

the med. just wasn't working yet.

On Tues. he did it again. This time I was home alone. We are still in the

hospital. They FINALLY did a swallow study which they had mentioned every time

and found that he aspirated food no matter the thickness. They immediately

thought G-tube, a tube in their stomach that give them nutrition. We were a

little rushed and didn't feel good about it. After finally getting our million

doctors together we concluded that we are going to do an NJ-tube. This will go

from his nose down his stomach and into the small bowel. This will allow him to

get feed and not reflux what he eats. This is more temporary and will probably

be the death of us. A 10 1/2 month old on continuous feeds attached to a wire

is not a good proposition. Our hope is that the less invasive method will work.

We will do another swallow study in 3 weeks after speech and oral therapy to see

if the healing and him getting over a cold will help his study improve. If not

we will have to go the more invasive route of a semi-permanent J-tube which goes

into their stomach. He would then still get therapy to improve oral skills.

Everything has been such a surprise. Because this started recently they are

thinking he just started aspirating, so they are not 00% sure the cause. I feel

the worst I have yet. loved his bottle, and because of his delays it was

one of the only words he would respond to. We would tell him that we were

getting his bottle and he was so happy. Now we have to take it away from him.

Then in 3 weeks tease him by letting him take a few sucks to testing his

swallowing. I don't know if I can do that to him, but I don't have much of a

choice. I know others go through so much more, but has been so tough

through everything he has been dealt and I just feel things keep piling on, and

I am going to go crazy!!!

Just keep in your thought and prayers please! I wanted to thank you

all for being so supportive. I thought of all of you when we were making our

decision. It is always best to try the less invasive because you can always go

forward. It is much harder to go back! Hope to be posting here soon, but I

will have a very busy next 3 weeks on inpatient rehab about 40 minutes from

home!

Talk to you all very soon,

11/19/04 " I hope I am home for Halloween and my birthday! "

[Guest guest]

/ & Chris/-

Big virtual hugs of support to both of you! Even though this is

a " clubfoot board " , I'm glad that we can be here to support each other

in all areas. Even though I have no personal experience with the

other medical issues that you must deal with- I'm glad that you feel

comfortable enough to share some of your worries with us so we can

keep you and your little ones in our thoughts and prayers. If nothing

else, it's also a good networking board in tapping into others

experiences and asking for help in researching different topics too.

Happy early birthday to !!!!!!!

& (3-16-00, left cf)