OT-really need to vent~

[Guest guest]

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! "