Re: Mads Gastrostomy and UK BBC2 Horizon programme

[Guest guest]

Gillian - our best to you and Mad during her surgery. We will be

thinking of you lot's. Haven't been through this ourselves - but,

I'm sure she will be just fine. Hugs to you. Please keep us

posted - okay?

- H

>

> Hello everyone,

>

> Just thought I'd give you an update on Mads' care. She is going

to have her gastrostomy on Wed 24th November at Great Ormond Street.

>

> Since she is less than 6kg (she is 5.7kg aged 13 months) she was

supposed to have the surgical team to do the procedure, but as her

weight is close to 6kg the tube will be put in by a team called

something like " invasive radiology " , it is still under a general

anaesthetic, but Mads will have to have a barium meal with us at the

hotel the night before.

>

> The endocrine senior house officer said she is likely to be out of

hospital by Friday evening, and will be OK to go to nursery the

followin Monday. We will have some education on how to use

the " peg " at the hospital and a visiting nurse will visit us (not

sure what for or how often) after the operation. I think the peg

may then be changed to a button by a further operation a few years

later if it loks like a long term need.

>

> Can anyone tell me what to expect from the operation and whether

this ties in with your experience?

>

> Thanks,

> Gillian

>

> PS - Did anyone in the UK see the Horizon programme " Ghosts in the

genes " on Thursday night - very interesting. It was

about " epigenetics " , which is a branch of genetics that has

uncovered evidence that a Mum & Dad's experience or even a Grandma

and Grandpa's experience at the time their eggs and sperm were

produced (such as famine and stress) can cause alterations in how

the genes behave, which can then be passed onto their children and

grandchildren. I think there is a really good chance this might

explain RSS.

>

>

>

[Guest guest]

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