Heart Cath.

[Guest guest]

,

Don't think we'll get a button as the surgeon who is doing it prefers PEG's .

Also ,the PEG nurse at our local hospital says he much prefers the Freka PEG

as the tube does not detach from the giving set as it screws into the end of

the tube. I must admit that in all the time Jack has had the PEG he never

once had a leak and since he has had the g-tube with the balloon it is always

coming undone and leaking all over his bed!!! He is very active, even when

asleep and is always getting tangled up!!

It would be great if they had a PEG without the long tube. Maybe they have

and I will be asking that question on 22nd Aug. I'm just so pleased to be

getting rid of this horrible g-tube that his old PEG seems wonderful!!!

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland

[Guest guest]

Elaine,

I'm glad you are getting what you are comfortable with. I'd like to see a PEG, I don't believe I've ever seen one. Have to do a net search!

Well, we are off for surgery tomorrow (it's Monday, but we always travel down a day ahead of time) and then onto my sister's for a few days vacation so I'll be offline for a week. If I'm not talking to you again, give Jack a big kiss from all of us before surgery!

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Heart Cath.

,Don't think we'll get a button as the surgeon who is doing it prefers PEG's . Also ,the PEG nurse at our local hospital says he much prefers the Freka PEG as the tube does not detach from the giving set as it screws into the end of the tube. I must admit that in all the time Jack has had the PEG he never once had a leak and since he has had the g-tube with the balloon it is always coming undone and leaking all over his bed!!! He is very active, even when asleep and is always getting tangled up!!It would be great if they had a PEG without the long tube. Maybe they have and I will be asking that question on 22nd Aug. I'm just so pleased to be getting rid of this horrible g-tube that his old PEG seems wonderful!!!Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGEDumfries,Scotland"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Elaine,

We will be thinking about you and will pray that all goes well on the

22nd. Take care.

, Jerry, Marissa 9, Christian 3, Eileen 55 days CHArgE

[Guest guest]

Hi all,

Just thought I'd let you know how things went with Jack's heart

catheterisation.

He had it done yesterday and all went well. They had problems getting a line

in for the anaesthetic and ended up giving him gas through the mask which was

OK. The cath showed that the pressure in his right ventricle is 4 times what

it should be and that they should be able to operate without using a conduit

(artificial tube). It also showed a problem we didn't know he had. He has

partial anomalous pulmonary drainage which is an extra blood vessel

(oxygenated blood) entering the right atrium. The surgeon will redirect it

when he operates on Jack.

After the cath. he slept for about an hour then he was wide awake and

chattering away to the nurses. They were all amazed at how quickly he

recovered!!

He will have his surgery in 3-4 mths time. His consultant had said that it

would normally have been 4 wks but because they have to clear Edinburgh's

backlog it would be longer. Glasgow is now the only place in Scotland where

children's cardiac surgery is performed. I'm kind of glad it's not 4wks time

as I'm a bit of a wreck at the moment.

Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE

Dumfries,Scotland