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Hi All,

I am in need of some SUPPORT! I knew I could come to you guys. So,

here goes.

recently had a pulmonary appointment in which they expressed

strong concerns about him refluxing, breathing a little faster, and

possibly aspiration. So, I gave them Dr. H's info and asked them to

discuss their concerns with her and see what she recommends. This

took place before the convention, mind you.

They called me the next day and told me that Dr. H wanted to

have another gastric emptying test done, to see if the reflux and

aspiration would happen to show up in that 90 minute time span. She

instructed them on how to perform the test, and it was scheduled for

the 27th, right after convention. When we saw Dr. H at convention,

she told me that they couldn't give her any concrete evidence as to

why they thought these things, but she also wanted to know, since she

has struggled with whether he has reflux or not. When we were in New

York, he had 2 DGET done, plus a Ph probe, and all supposedly came

back with the normal range. Plus, this wasn't the first Ph probe he

had done! So, all the tests so far showed that he DID NOT have

reflux, but yet he was and is still spitting up all the time!

So, on to the test and results. We had the test done this past

Tuesday. It was just awful. You know how they hate it when you even

take them into a room with all this machinery and people standing

around. They aren't stupid! So, I lay down, and she starts

to bolus him. Which isn't a favorite to him, as he spits up every

time! So, he spit up before the test even started! They had to

clean him up, and slide him under the camera. He spit up a total of

six times, thank goodness (or maybe not), the camera caught some of

the episodes. They had to keep changing the sheets and wipe him up.

It was a mess, literally! He spit up, or should I say threw up so

much I even asked if there was anything left in his stomach! She

told me there was a little left! Ugh! So, at the end of the whole

ordeal, I asked if they were going to be able to tell whether this

was reflux, and if he was aspirating, because these are the things I

wanted to know. So, she gave me a puzzled look, and went to talk to

another technician. She came abck and asked to take one more picture

of him with a film under him so they could see his lungs better. So,

they did.

Anyway, to make this long story longer, I got the results back

Thursday. I have been struggling with this for a couple days, and

debated on whether to even post anything, since I am waiting on Dr.

H's recommendation from here. But, I really can't take this any more

and I wanted and needed some supporrt from you all.

The results are that showed severe reflux during the test, and

that, yes, he is ASPIRATING!!!!! All this time, I have told them

that he has reflux, and that I was worried about him aspirating!

They did a stupid swallow study and said, nope, he is swallowing just

fine, and no aspiration! His other two DGET showed no reflux and

aspiration, you have nothing to worry about!!!! So, now this year I

take him to pulmonary, and it is a different story. Why weren't

they worried about it before? Go figure. SO, anyway, I am

struggling with what to do here. We have two options! We can go

back to a j tube, which is the tube he wasn't growing on. The tube

he had previous to seeing Dr. H, or we could do the Nissen. With

either of these two choices, there are pros and cons, and the

decission either way won't be easy. I know waht Dr. H will say. He

needs the Nissen. But, it worries me that he will go through that

MAJOR surgery, and it will be for nothing. How many times at the

convention did I hear them talking about kids blowing them, or that

they just did not stop the refluxing! Ugh! And with the j tube.

didn't grow on that! And, do I want to make his whole

digestive system abnormal again, and not have anything in his belly.

And, will I be able to give him food still, since he is aspirating?

I mean, won't he still spit up, and aspirate that? When he was on

the j tube before, he was getting a lot of bile in his stomach, and

he was spitting that yucky green stuff up back then. Dr. H said that

wasn't normal, thus the reason for changing him to the g tube again!

So, here I sit with these questions, and this stress of making this

huge decission that will affect my child's life, from here on. I

can't let him aspirate adn risk the damage that could happen. I am

so torn and so nervous, and so stressed. I am having major back

trouble, and I am attributing that to the stress. I am trying to

deal with this, and wait for Dr. H's suggestions, but I feel I

already know what she will say. The Nissen. And, I have to say I

really don't feel comfortable having surgeons here do it because they

have done so many different things with that surgery for our

kids......! Okay, I have rambled here long enough. It is just so

nerve racking that I have said all along that he is refluxing, but

the tests show not. Also, that is one of the reasons I went to New

York. I was prepared that he would possibly have that surgery, but

when the tests Dr. H had run didn't show anything, they decided

against it. So, that is annoying and frustrating because in her

heart she thought it was reflux, but the tests showed it wasn't. His

pediatrician has said all along it was reflux. Even his GI docotr

said it was, despite the testing he had done. So, my frustration too,

lies in that we could have done something about this while I was in

New York with him. Instead, we let the spitting up go on, and I

guess aspirating too. So, I just wanted to reach out to you all, and

some of you had inquired about wanting to know what the pulomanary

people said, and others wanted to know the tests results. So, here

it all is. In a nice long and dragged out post. This just confirms

my stress level and frustration! ) I am sorry I used so many

words, but that's one of my downfalls I guess! )

Thanks for listening!

Jodi R.

's mommy

He has been through so much already!