/Dayna/Jodie Z/Re: Finlay.....help!!!

[Guest guest]

Hi All,

I just wanted to note that Braeden doesen't have anesthesia and I'm

in the room with him and the radiology team when they re-insert his

J-tube. They usually have me try to keep his attention away from

grabbing the tube they are trying to insert. Although, when he was

younger and he went to a different hospital they would administer a

light anesthesia. His current radioligist say's " It feels like a

tickle " when they insert the J-tube. We also use Mirilax and the

Farrell Valve at night and it really has helped.

Thanks,

Saundra

> ,

>

> Whenever Max gets one of these stomach bugs, it sets him back

quite

> a bit. He loses weight, cannot tolerate tube feeds and winds up

> spending almost 2 weeks in the hospital. It is scary and

> frustrating.

>

> That being said, I have to add that the g-j tube is a godsend for

> us. With it he has tolerated feedings sooner and even avoided the

> hospital with the last bout of stomach issues. We have been able

to

> run his pump continuously and used the Farrell Valve at night for

> venting continuously. Adding Miralax, a prescription laxative,

> helps, too. He does not get gassy, bloated or anything.

>

> Well, I guess that is relative. When he gets the stomach bug, his

> stomach becomes distended and it takes weeks, if not months, to

> return to normal. His stomach is still shrinking from the last

> event which was 2 months ago. He is nauseous at least once a day

> and takes Zofran as needed for it. Sometimes it is really bad and

> we have to add Benadryl. It has something in it that helps

nausea,

> believe it or not! (By the way, Max is not on pump feedings now.

> He is feeling relatively well.)

>

> I am telling you this because I think Max and Finlay are very much

> alike in this area. Putting in a g-j tube is no big deal. Max

has

> to have general anesthesia when they do it, though, because he

gets

> way too anxious. They say it can be done without it, but he just

> can't do it and I can't make him do it. I don't think I would

want

> to know what they are doing, either.

>

> I hope Finlay recovers soon. I also hope that this info helps

> you.

>

> Jodi Z.

> P.S. I just spent three days with ne Barrie and .

What

> a time we had!