Amelie....need help

[Guest guest]

AMELIE STABLE NO PLANS TO EXTUBATE, SHE IS NOT READY, NOW IN 50%

OXYGEN AND SATS LOW 90'S

Long day Monday everyone back from the weekend, seen just about every

team Amelie has today.

Dont think between us we know what to do for the best.

I will do this in stages then please help....!!

Intensive Care Consultant, asked about the 14 months as dont forget

this hospital has only known Amelie since christmas, gave him the

story about once the Fundo was done in May last year we had four

wonderful months, without reflux, and he was also interested that

three out of four children have lactose intolerance and food

allergies, he said we are right to rule other issues out, and he has

agreed to send samples off for all sorts of allergies, and to wait for

biopsy results, but he said it looked like the nissen had done the

trick initially, which could conclusively rule out any other

underlying issues, because if she had a TOF or fistula or

uncoordinated swallow, she would still have had pneumonias in the four

months when she had nothing!

He also said that when Amelie had her nissen done, she was tiny and

frail 3Kg and these are very difficult to do when so little, 10% fail,

and it would be easier to do this procedure now she was bigger, and

maybe with better results.

Respiratory: There priority is the lung situation which isnt good, THE

LEFT LOWER LOBE HAS COLLAPSED,they said which ever way we look at it

we are headed down the surgical root they agree that she is not well

enough at present for disassociation, and that if they had to fall off

the fence, they would choose repeat nissen, in light of this latest

upset with GA and lungs.

We have spoken to Amelies Paed doctor Lydia, who has had Amelie since

birth, she was against the disassociation from the ofset, and has

agreed to come to an appointment with everyone if we can get this

organised, problem is everyone has holidays coming up.

QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE:

1 SHOULD WE RISK A REPEAT NISSEN??

2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS,

TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one??

3 HAS ANYONE NEEDED A THIRD ONE DOING??

ANY OTHER INPUT WOULD BE GREATLY APPRECIATED, AND THANK YOU TO ALL THE

PRIVATE E-MAILS AS WELL WE ARE SO VERY GLAD YOU ARE ALL HERE

LOVE LES