Re: Re: OT-really need to vent~

[Guest guest]

You're in our prayers too!

Kim

wrote:

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]

Jen, we are keeping you and in our prayers. Hang in there because

needs your strength.

wrote:

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! "

>

>

>