Re: Re: Mads Gastrostomy and UK BBC2 Horizon programme

[Guest guest]

Jodi,

Thanks for your advice - I will bear all this in mind.

Gillian

Jodi Zwain wrote:

Gillian,

Is it called Interventional Radiology? That is the team that put in

Max's g-j tube. They were awesome. It's just amazing what can be

done without major surgery these days.

Having the tube put in on Wednesday and her coming home on Friday

seems to be pretty quick to me. Usually there is some discomfort at

first ( who wouldn't be sore after having a hole punched in her

stomach?) and the doctors wait 24 hours for that to heal. Then they

start diluted formula at first and gradually increase the strength

and rate over a period of days. Here in the US that usually takes

about 5-7 days, depending on how well the child tolerates the

feeds.

PLEASE do not rush to have your daughter discharged. It is better

to stay in the hospital for a few extra days and make sure she is

tolerating things before you go home. You don't want to have to go

back again. And she should have IV support until she is tolerating

enough to keep ketones and blood sugar levels stable.

When it comes time to put in the button, there is no surgery

involved. The tube that will be in place will just be removed. It

will probably be held in place with a couple of stitches. A button

can then be slipped in and inflated. It takes just a matter of

minutes to do this.

Keep an eye on the pain/discomfort. It hurts more than they are

letting you believe.

Jodi Z