Re: AMELIE -- BACK IN HOSPITAL WEDNESDAY EVENING

[Guest guest]

Oh no

I hope they get things sorted out and she's back home really soon.

Hugs

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

Lesley,

Just enough taste of home to really wet your appetite.

Looking at EE may be a very good thing, but also do not let them

overestimate how sensitive our kids can be to the tiniest change. An

increase in the rate of 5cc/hr can be too much, a total change in formula

can be too much. It seems dietary changes must proceed slowly and

carefully.

On the doctor. Tyler was sent home one day, and went back to the ER that

night via ambulance. In the ER the doctor said basically there was nothing

else that could be done in the hospital and I just needed to accept it. He

did notice that I was very upset by this as I just started to cry. He

agreed to speak with me privately, so I told him again that there was a

change between discharge and the time he got home. He admitted him for some

lame excuse, mainly to make me feel better. When he started peeing blood

and ended up in surgery again the next am, he became a staunch ally. Maybe

this guy will now turn out to be a good doc to have on hand, because he will

undoubtedly pay close attention to you and Amelie.

Kim

> Dear All

>

> Bl**dy Hell, feel as if i am in hell for sure!!!

>

> It must have been the most short lived discharge to date.

>

> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

>

> This morning i changed her milk like i was instructed to do, from

> neocate to neocate advanced. I think they are more or less the same

> milk just more calories not sure I think so.

>

> Any how she started crying this morning and as i said before she

> rarely cries. it usually is a sign somethings wrong, after about two

> hours or so she was making retching sounds as if she wanted to

> reflux, and her secretions got heavier and heavier.

>

> At 2.45pm she brought down her nose the most huge and horrendous

> thick bright yellow gunk, and i had put her meds in at 2.30pm so i

> thought definitly reflux and in the car we got back to the hospital

> acute ward for assessment.

>

> Where it went from bad to worse for us not Amelie!!!!

>

> They called the doctor in who was on call for acute referal, it was

> only the bloke who sent her home the night before she literally

> died , I was horrified, but strangely could not bring myself to

> say ''I am not having you no way!!'' he went crimson in colour and

> looked as morified as I did, i have to say he was ever so nice, and

> after he asked me what had happened, his next words were ' I WILL

> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO BEDS IN

> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>

> I insisted they check the position of the j tube incase it was back

> in the stomach, but its not its fine, the only thing I can think of

> is the milk, i suspended her feeds at 2.45pm and for the last 4

> hours she hasnt retched once hasnt cried and is very happy again

> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>

> the other thing is her poops are very watery, and they have been

> more solid whilst in the jejenum, so maybe a bug or the milk, I dont

> think she will be in long, hopefully on the ward round tomorrow they

> will have a plan of action, but in case she aspirated the stuff that

> came up they might want to check with respiratory as her sats are

> lower this evening not too bad around 89 / 92

>

> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>

> also the EE thing makes me wonder if she is EE rather than reflux, i

> hope ENT hurry up I will ask them to check for this EE thing, as we

> seem to be a food allergy chan clan!

>

> LOVE LESLEY,

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

I could just scream--can't imagine how you feel!!! hope they find the

answer soon!

AMELIE -- BACK IN HOSPITAL WEDNESDAY EVENING

> Dear All

>

> Bl**dy Hell, feel as if i am in hell for sure!!!

>

> It must have been the most short lived discharge to date.

>

> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

>

> This morning i changed her milk like i was instructed to do, from

> neocate to neocate advanced. I think they are more or less the same

> milk just more calories not sure I think so.

>

> Any how she started crying this morning and as i said before she

> rarely cries. it usually is a sign somethings wrong, after about two

> hours or so she was making retching sounds as if she wanted to

> reflux, and her secretions got heavier and heavier.

>

> At 2.45pm she brought down her nose the most huge and horrendous

> thick bright yellow gunk, and i had put her meds in at 2.30pm so i

> thought definitly reflux and in the car we got back to the hospital

> acute ward for assessment.

>

> Where it went from bad to worse for us not Amelie!!!!

>

> They called the doctor in who was on call for acute referal, it was

> only the bloke who sent her home the night before she literally

> died , I was horrified, but strangely could not bring myself to

> say ''I am not having you no way!!'' he went crimson in colour and

> looked as morified as I did, i have to say he was ever so nice, and

> after he asked me what had happened, his next words were ' I WILL

> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO BEDS IN

> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>

> I insisted they check the position of the j tube incase it was back

> in the stomach, but its not its fine, the only thing I can think of

> is the milk, i suspended her feeds at 2.45pm and for the last 4

> hours she hasnt retched once hasnt cried and is very happy again

> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>

> the other thing is her poops are very watery, and they have been

> more solid whilst in the jejenum, so maybe a bug or the milk, I dont

> think she will be in long, hopefully on the ward round tomorrow they

> will have a plan of action, but in case she aspirated the stuff that

> came up they might want to check with respiratory as her sats are

> lower this evening not too bad around 89 / 92

>

> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>

> also the EE thing makes me wonder if she is EE rather than reflux, i

> hope ENT hurry up I will ask them to check for this EE thing, as we

> seem to be a food allergy chan clan!

>

> LOVE LESLEY,

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley

Not sure which post to reply to, but didn't tolerate infantrini (or

however its spelt). Equally she had problems with other high fat feeds. Flo

dealt with this by reducing the amount per feed and making them more often.

This sorted (note she has never had problems with reflux).

I cannot remember when (Flo I'm sure will say when) but also went

non cows milk products because of my lactose intolerance.

Let's hope Amelie's are out again soon and for longer.

Simon

[Guest guest]

Cheers simon

this lactose thing is more common than i thought, do you avoid any

other foods, just asking for my 11 year old who is either very fussy

or truely her body is telling her dont eat that, i'm not well up on

it, but i dont force her to eat something if she says she doesnt

like it, also does your skin become irritable and flair up????

very personal i know.....sorry email me privately if you dont fancy

sharing it !!

although i like to share everything on here these days!!

Lesley xxx

>

> Lesley

>

> Not sure which post to reply to, but didn't tolerate

infantrini (or

> however its spelt). Equally she had problems with other high fat

feeds. Flo

> dealt with this by reducing the amount per feed and making them

more often.

> This sorted (note she has never had problems with reflux).

>

> I cannot remember when (Flo I'm sure will say when) but

also went

> non cows milk products because of my lactose intolerance.

>

> Let's hope Amelie's are out again soon and for longer.

>

> Simon

>

>

>

[Guest guest]

Kim

Thats exactly how i felt tonight when the doc left, he seemed to be

over cautious which is good, our kids should not be underestimated,

and in her personal 'all about me book' which goes everywhere she

goes, i put a happy picture in together with the life support

picture christmas day, and the caption,' when I am healthy i am

happy' and on the vented one 'when I am sick do not underestimate

me, i decline rapidly' simply because of her being sent home the

night before.

maybe tonight he read that in her book he took it off to get a list

of her meds from it! He has probably learned his lesson.

cheers Lesley

>

> > Dear All

> >

> > Bl**dy Hell, feel as if i am in hell for sure!!!

> >

> > It must have been the most short lived discharge to date.

> >

> > Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

> >

> > This morning i changed her milk like i was instructed to do, from

> > neocate to neocate advanced. I think they are more or less the

same

> > milk just more calories not sure I think so.

> >

> > Any how she started crying this morning and as i said before she

> > rarely cries. it usually is a sign somethings wrong, after about

two

> > hours or so she was making retching sounds as if she wanted to

> > reflux, and her secretions got heavier and heavier.

> >

> > At 2.45pm she brought down her nose the most huge and horrendous

> > thick bright yellow gunk, and i had put her meds in at 2.30pm so

i

> > thought definitly reflux and in the car we got back to the

hospital

> > acute ward for assessment.

> >

> > Where it went from bad to worse for us not Amelie!!!!

> >

> > They called the doctor in who was on call for acute referal, it

was

> > only the bloke who sent her home the night before she literally

> > died , I was horrified, but strangely could not bring myself to

> > say ''I am not having you no way!!'' he went crimson in colour

and

> > looked as morified as I did, i have to say he was ever so nice,

and

> > after he asked me what had happened, his next words were ' I WILL

> > HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

> > THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

BEDS IN

> > THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

> >

> > I insisted they check the position of the j tube incase it was

back

> > in the stomach, but its not its fine, the only thing I can think

of

> > is the milk, i suspended her feeds at 2.45pm and for the last 4

> > hours she hasnt retched once hasnt cried and is very happy again

> > IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

> >

> > the other thing is her poops are very watery, and they have been

> > more solid whilst in the jejenum, so maybe a bug or the milk, I

dont

> > think she will be in long, hopefully on the ward round tomorrow

they

> > will have a plan of action, but in case she aspirated the stuff

that

> > came up they might want to check with respiratory as her sats are

> > lower this evening not too bad around 89 / 92

> >

> > SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

> > NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

> >

> > also the EE thing makes me wonder if she is EE rather than

reflux, i

> > hope ENT hurry up I will ask them to check for this EE thing, as

we

> > seem to be a food allergy chan clan!

> >

> > LOVE LESLEY,

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Lesley,

OMG I feel so bad for you!! I have no idea how you do it, I would be

gone beyond my mind. I lose it when I have 3 theropist, and 2

doctors appointments in the same week.

I will pray she will be home soon and they know what to do next!!

Hugs,

Crystal and Eva (9 month charger)

>

> Dear All

>

> Bl**dy Hell, feel as if i am in hell for sure!!!

>

> It must have been the most short lived discharge to date.

>

> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

>

> This morning i changed her milk like i was instructed to do, from

> neocate to neocate advanced. I think they are more or less the

same

> milk just more calories not sure I think so.

>

> Any how she started crying this morning and as i said before she

> rarely cries. it usually is a sign somethings wrong, after about

two

> hours or so she was making retching sounds as if she wanted to

> reflux, and her secretions got heavier and heavier.

>

> At 2.45pm she brought down her nose the most huge and horrendous

> thick bright yellow gunk, and i had put her meds in at 2.30pm so i

> thought definitly reflux and in the car we got back to the

hospital

> acute ward for assessment.

>

> Where it went from bad to worse for us not Amelie!!!!

>

> They called the doctor in who was on call for acute referal, it

was

> only the bloke who sent her home the night before she literally

> died , I was horrified, but strangely could not bring myself to

> say ''I am not having you no way!!'' he went crimson in colour and

> looked as morified as I did, i have to say he was ever so nice,

and

> after he asked me what had happened, his next words were ' I WILL

> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO BEDS

IN

> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>

> I insisted they check the position of the j tube incase it was

back

> in the stomach, but its not its fine, the only thing I can think

of

> is the milk, i suspended her feeds at 2.45pm and for the last 4

> hours she hasnt retched once hasnt cried and is very happy again

> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>

> the other thing is her poops are very watery, and they have been

> more solid whilst in the jejenum, so maybe a bug or the milk, I

dont

> think she will be in long, hopefully on the ward round tomorrow

they

> will have a plan of action, but in case she aspirated the stuff

that

> came up they might want to check with respiratory as her sats are

> lower this evening not too bad around 89 / 92

>

> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>

> also the EE thing makes me wonder if she is EE rather than reflux,

i

> hope ENT hurry up I will ask them to check for this EE thing, as

we

> seem to be a food allergy chan clan!

>

> LOVE LESLEY,

>

[Guest guest]

I love the captions you put in her book and yes over-cautious is certainly

good right now. Kim

> Kim

>

> Thats exactly how i felt tonight when the doc left, he seemed to be

> over cautious which is good, our kids should not be underestimated,

> and in her personal 'all about me book' which goes everywhere she

> goes, i put a happy picture in together with the life support

> picture christmas day, and the caption,' when I am healthy i am

> happy' and on the vented one 'when I am sick do not underestimate

> me, i decline rapidly' simply because of her being sent home the

> night before.

>

> maybe tonight he read that in her book he took it off to get a list

> of her meds from it! He has probably learned his lesson.

>

> cheers Lesley

>

>

>

>

>

>>

>>> Dear All

>>>

>>> Bl**dy Hell, feel as if i am in hell for sure!!!

>>>

>>> It must have been the most short lived discharge to date.

>>>

>>> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

>>>

>>> This morning i changed her milk like i was instructed to do, from

>>> neocate to neocate advanced. I think they are more or less the

> same

>>> milk just more calories not sure I think so.

>>>

>>> Any how she started crying this morning and as i said before she

>>> rarely cries. it usually is a sign somethings wrong, after about

> two

>>> hours or so she was making retching sounds as if she wanted to

>>> reflux, and her secretions got heavier and heavier.

>>>

>>> At 2.45pm she brought down her nose the most huge and horrendous

>>> thick bright yellow gunk, and i had put her meds in at 2.30pm so

> i

>>> thought definitly reflux and in the car we got back to the

> hospital

>>> acute ward for assessment.

>>>

>>> Where it went from bad to worse for us not Amelie!!!!

>>>

>>> They called the doctor in who was on call for acute referal, it

> was

>>> only the bloke who sent her home the night before she literally

>>> died , I was horrified, but strangely could not bring myself to

>>> say ''I am not having you no way!!'' he went crimson in colour

> and

>>> looked as morified as I did, i have to say he was ever so nice,

> and

>>> after he asked me what had happened, his next words were ' I WILL

>>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

>>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

> BEDS IN

>>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>>>

>>> I insisted they check the position of the j tube incase it was

> back

>>> in the stomach, but its not its fine, the only thing I can think

> of

>>> is the milk, i suspended her feeds at 2.45pm and for the last 4

>>> hours she hasnt retched once hasnt cried and is very happy again

>>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>>>

>>> the other thing is her poops are very watery, and they have been

>>> more solid whilst in the jejenum, so maybe a bug or the milk, I

> dont

>>> think she will be in long, hopefully on the ward round tomorrow

> they

>>> will have a plan of action, but in case she aspirated the stuff

> that

>>> came up they might want to check with respiratory as her sats are

>>> lower this evening not too bad around 89 / 92

>>>

>>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

>>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>>>

>>> also the EE thing makes me wonder if she is EE rather than

> reflux, i

>>> hope ENT hurry up I will ask them to check for this EE thing, as

> we

>>> seem to be a food allergy chan clan!

>>>

>>> LOVE LESLEY,

>>>

>>>

>>>

>>>

>>>

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c... or visit

>>> the web site at http://www.chargesyndrome.org - for CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca or email

>>> info@c... .

>>> 8th International

>>> CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>>> www.chargesyndrome.org or by calling 1-.

>>>

[Guest guest]

kim lesly yep if we werent so many of us would of beendead at birth LOL well

maybe nto at birth but soon after simon im lactose intolerant so if ameilie

is i wouldnt be surprised they say with me its part of the dumping so if

soemthings got lactose in it its likely ill bring it up and heres a funny

thing to grandpas got diabeties now thats a strange coinceidnece huh lol

xxxxxxxxxx ellen in aus

>

> I love the captions you put in her book and yes over-cautious is certainly

> good right now. Kim

>

>

>

>

> > Kim

> >

> > Thats exactly how i felt tonight when the doc left, he seemed to be

> > over cautious which is good, our kids should not be underestimated,

> > and in her personal 'all about me book' which goes everywhere she

> > goes, i put a happy picture in together with the life support

> > picture christmas day, and the caption,' when I am healthy i am

> > happy' and on the vented one 'when I am sick do not underestimate

> > me, i decline rapidly' simply because of her being sent home the

> > night before.

> >

> > maybe tonight he read that in her book he took it off to get a list

> > of her meds from it! He has probably learned his lesson.

> >

> > cheers Lesley

> >

> >

> >

> >

> >

> >>

> >>> Dear All

> >>>

> >>> Bl**dy Hell, feel as if i am in hell for sure!!!

> >>>

> >>> It must have been the most short lived discharge to date.

> >>>

> >>> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

> >>>

> >>> This morning i changed her milk like i was instructed to do, from

> >>> neocate to neocate advanced. I think they are more or less the

> > same

> >>> milk just more calories not sure I think so.

> >>>

> >>> Any how she started crying this morning and as i said before she

> >>> rarely cries. it usually is a sign somethings wrong, after about

> > two

> >>> hours or so she was making retching sounds as if she wanted to

> >>> reflux, and her secretions got heavier and heavier.

> >>>

> >>> At 2.45pm she brought down her nose the most huge and horrendous

> >>> thick bright yellow gunk, and i had put her meds in at 2.30pm so

> > i

> >>> thought definitly reflux and in the car we got back to the

> > hospital

> >>> acute ward for assessment.

> >>>

> >>> Where it went from bad to worse for us not Amelie!!!!

> >>>

> >>> They called the doctor in who was on call for acute referal, it

> > was

> >>> only the bloke who sent her home the night before she literally

> >>> died , I was horrified, but strangely could not bring myself to

> >>> say ''I am not having you no way!!'' he went crimson in colour

> > and

> >>> looked as morified as I did, i have to say he was ever so nice,

> > and

> >>> after he asked me what had happened, his next words were ' I WILL

> >>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

> >>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

> > BEDS IN

> >>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

> >>>

> >>> I insisted they check the position of the j tube incase it was

> > back

> >>> in the stomach, but its not its fine, the only thing I can think

> > of

> >>> is the milk, i suspended her feeds at 2.45pm and for the last 4

> >>> hours she hasnt retched once hasnt cried and is very happy again

> >>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

> >>>

> >>> the other thing is her poops are very watery, and they have been

> >>> more solid whilst in the jejenum, so maybe a bug or the milk, I

> > dont

> >>> think she will be in long, hopefully on the ward round tomorrow

> > they

> >>> will have a plan of action, but in case she aspirated the stuff

> > that

> >>> came up they might want to check with respiratory as her sats are

> >>> lower this evening not too bad around 89 / 92

> >>>

> >>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

> >>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

> >>>

> >>> also the EE thing makes me wonder if she is EE rather than

> > reflux, i

> >>> hope ENT hurry up I will ask them to check for this EE thing, as

> > we

> >>> seem to be a food allergy chan clan!

> >>>

> >>> LOVE LESLEY,

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> Membership of this email support groups does not constitute

> > membership in the

> >>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >>> For information about the CHARGE Syndrome

> >>> Foundation or to become a member (and get the newsletter),

> >>> please contact marion@c... or visit

> >>> the web site at http://www.chargesyndrome.org - for CHARGE

> > Syndrome Canada

> >>> information and membership, please visit

> > http://www.chargesyndrome.ca or email

> >>> info@c... .

> >>> 8th International

> >>> CHARGE Syndrome Conference, July, 2007. Information will be

> > available at

> >>> www.chargesyndrome.org or by calling 1-.

> >>>

[Guest guest]

Oh, Lesley, I should have read further before replying to your prior post! I'm

so sorry to hear that Amelie had to go back to the hospital again so soon.

Geesh, will you guys ever get a break?? Thinking about you and hoping that

things improve quickly and that you get to the bottom of the feeding issue.

, mom to (4)

---------------------------------

Yahoo! Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Lesley-

Eegads! Seems to me that maybe that ENT scope is warranted right now --

maybe the surgical team will have to put in a long day to fit her onto the

end of the schedule. Whatever. Poor kid needs to be able to eat safely.

I'm sorry you have to be back in the hospital. Hopefully this round will be

easier because you have become such an aggressive advocate and know what to

look for and because they surely won't mess around with you because they are

learning you are a tough cookie!

Michele W

[Guest guest]

Lesley-

Just to reiterate what Kim said about minor feeding changes being a huge

deal. Aubrie could not tolerate rate increases unless they were done very

slowly. Drs would recommend a small increase that seemed reasonable enough

to them, but it would cause huge vomiting. Remember she had GE reflux but

no nissen. It was as if her little tummy just couldn't handle the required

amount of food. And if we increased the calories, she reacted.

Finally, we tried Nutramigen formula -- a hypoallergenic formula. There was

no medical reason it should make a difference. She'd tested negative for

cow's milk allergies. But the dr agreed that we could try even tho she knew

no reason it should work. It was a miraculous difference! Again -- no way

to explain it medically, but it was huge!

So keep in mind that things don't have to make sense. Our kids require that

we think way outside the box and try things just because.

Thinking of you.

Michele W

[Guest guest]

Lesley-

That is an awesome way to present her in her book!!! Kudos to you for

finding time to do it and for thinking of it!

Michele W

[Guest guest]

Lesley,

I am glad you didn't delay in seeking medical attention. I am so sorry that it

ended up as another admission.

As far as the Doctor (as horrible as that experience was), we all make mistakes.

He just happens to be in the field of medicine. He will regret that for the

rest of his life (judging by the look on his face as you described it).

My Tyler had an experience too where his physician was too lax on not listening

to me. We had made two office visits (he was fine by the doctors standards) and

ended up in the hospital with RSV. He NEVER took me for granted again. I was

just mom then.

My last e-mail to you was that Amelie was quite possibly refluxing. One thing

you have to be careful with is the type of formula that you introduce into the

jejunum because it needs to be partially digested. Can you have a 27 calorie

formula so that you can decrease the amount of feedings (which wouldn't make her

tummy feel so full which, in turn would not apply back pressure to the duodenum

and stomach). If this ever occurs again, feel her abdomen and feel if it is

soft and round or if it firm or slightly firm. It should be soft.

Making her NPO allowed her intestines to empty and therefore made her a happy

babe. I am not sure if it is lactose or not. I would think you would have seen

signs while she was still in the hospital the first time. I could be mistaken.

Watery " poops " makes me wonder too if it could be going through her system too

fast. Could you ask for a Registered Dietician consult?!?!?!?!?!?!?!?!?!?

May this be a short " visit. " I am glad that even though you are under lots of

stress, you are still able to think! I love that you gave the physician your

book. He needs to realize that parents have feelings are that patients are

people. It will help him " stay connected. " Good job!

Love,

Kristy

Re: Re: AMELIE -- BACK IN HOSPITAL WEDNESDAY EVENING

I love the captions you put in her book and yes over-cautious is certainly

good right now. Kim

On 1/18/06 3:35 PM, " Lesley Chan "

> wrote:

> Kim

>

> Thats exactly how i felt tonight when the doc left, he seemed to be

> over cautious which is good, our kids should not be underestimated,

> and in her personal 'all about me book' which goes everywhere she

> goes, i put a happy picture in together with the life support

> picture christmas day, and the caption,' when I am healthy i am

> happy' and on the vented one 'when I am sick do not underestimate

> me, i decline rapidly' simply because of her being sent home the

> night before.

>

> maybe tonight he read that in her book he took it off to get a list

> of her meds from it! He has probably learned his lesson.

>

> cheers Lesley

>

>

>

>

>

>>

>>> Dear All

>>>

>>> Bl**dy Hell, feel as if i am in hell for sure!!!

>>>

>>> It must have been the most short lived discharge to date.

>>>

>>> Last night she was fine happy sats 98 / 99 down to 1.5 litres o2.

>>>

>>> This morning i changed her milk like i was instructed to do, from

>>> neocate to neocate advanced. I think they are more or less the

> same

>>> milk just more calories not sure I think so.

>>>

>>> Any how she started crying this morning and as i said before she

>>> rarely cries. it usually is a sign somethings wrong, after about

> two

>>> hours or so she was making retching sounds as if she wanted to

>>> reflux, and her secretions got heavier and heavier.

>>>

>>> At 2.45pm she brought down her nose the most huge and horrendous

>>> thick bright yellow gunk, and i had put her meds in at 2.30pm so

> i

>>> thought definitly reflux and in the car we got back to the

> hospital

>>> acute ward for assessment.

>>>

>>> Where it went from bad to worse for us not Amelie!!!!

>>>

>>> They called the doctor in who was on call for acute referal, it

> was

>>> only the bloke who sent her home the night before she literally

>>> died , I was horrified, but strangely could not bring myself to

>>> say ''I am not having you no way!!'' he went crimson in colour

> and

>>> looked as morified as I did, i have to say he was ever so nice,

> and

>>> after he asked me what had happened, his next words were ' I WILL

>>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A PRECAUTION!!!!!!

>>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

> BEDS IN

>>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>>>

>>> I insisted they check the position of the j tube incase it was

> back

>>> in the stomach, but its not its fine, the only thing I can think

> of

>>> is the milk, i suspended her feeds at 2.45pm and for the last 4

>>> hours she hasnt retched once hasnt cried and is very happy again

>>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>>>

>>> the other thing is her poops are very watery, and they have been

>>> more solid whilst in the jejenum, so maybe a bug or the milk, I

> dont

>>> think she will be in long, hopefully on the ward round tomorrow

> they

>>> will have a plan of action, but in case she aspirated the stuff

> that

>>> came up they might want to check with respiratory as her sats are

>>> lower this evening not too bad around 89 / 92

>>>

>>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY BIRTHDAY

>>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>>>

>>> also the EE thing makes me wonder if she is EE rather than

> reflux, i

>>> hope ENT hurry up I will ask them to check for this EE thing, as

> we

>>> seem to be a food allergy chan clan!

>>>

>>> LOVE LESLEY,

>>>

>>>

>>>

>>>

>>>

>>>

>>> Membership of this email support groups does not constitute

> membership in the

>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>> For information about the CHARGE Syndrome

>>> Foundation or to become a member (and get the newsletter),

>>> please contact marion@c<mailto:marion@c>... or visit

>>> the web site at

http://www.chargesyndrome.org<http://www.chargesyndrome.org/> - for CHARGE

> Syndrome Canada

>>> information and membership, please visit

> http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

>>> info@c<mailto:info@c>... .

>>> 8th International

>>> CHARGE Syndrome Conference, July, 2007. Information will be

> available at

>>> www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

1-.

>>>

[Guest guest]

Kristy

Tyler's RSV is this RSV positive that Amelie has just had as part of

the brochiolitis, they used that abbreviation?? if so what is the

RSV standing for???

Cheers my dear

Lesleyxxxxx

> >>

> >>> Dear All

> >>>

> >>> Bl**dy Hell, feel as if i am in hell for sure!!!

> >>>

> >>> It must have been the most short lived discharge to date.

> >>>

> >>> Last night she was fine happy sats 98 / 99 down to 1.5

litres o2.

> >>>

> >>> This morning i changed her milk like i was instructed to do,

from

> >>> neocate to neocate advanced. I think they are more or less

the

> > same

> >>> milk just more calories not sure I think so.

> >>>

> >>> Any how she started crying this morning and as i said before

she

> >>> rarely cries. it usually is a sign somethings wrong, after

about

> > two

> >>> hours or so she was making retching sounds as if she wanted

to

> >>> reflux, and her secretions got heavier and heavier.

> >>>

> >>> At 2.45pm she brought down her nose the most huge and

horrendous

> >>> thick bright yellow gunk, and i had put her meds in at

2.30pm so

> > i

> >>> thought definitly reflux and in the car we got back to the

> > hospital

> >>> acute ward for assessment.

> >>>

> >>> Where it went from bad to worse for us not Amelie!!!!

> >>>

> >>> They called the doctor in who was on call for acute referal,

it

> > was

> >>> only the bloke who sent her home the night before she

literally

> >>> died , I was horrified, but strangely could not bring myself

to

> >>> say ''I am not having you no way!!'' he went crimson in

colour

> > and

> >>> looked as morified as I did, i have to say he was ever so

nice,

> > and

> >>> after he asked me what had happened, his next words were ' I

WILL

> >>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A

PRECAUTION!!!!!!

> >>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

> > BEDS IN

> >>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

> >>>

> >>> I insisted they check the position of the j tube incase it

was

> > back

> >>> in the stomach, but its not its fine, the only thing I can

think

> > of

> >>> is the milk, i suspended her feeds at 2.45pm and for the

last 4

> >>> hours she hasnt retched once hasnt cried and is very happy

again

> >>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

> >>>

> >>> the other thing is her poops are very watery, and they have

been

> >>> more solid whilst in the jejenum, so maybe a bug or the

milk, I

> > dont

> >>> think she will be in long, hopefully on the ward round

tomorrow

> > they

> >>> will have a plan of action, but in case she aspirated the

stuff

> > that

> >>> came up they might want to check with respiratory as her

sats are

> >>> lower this evening not too bad around 89 / 92

> >>>

> >>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY

BIRTHDAY

> >>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

> >>>

> >>> also the EE thing makes me wonder if she is EE rather than

> > reflux, i

> >>> hope ENT hurry up I will ask them to check for this EE

thing, as

> > we

> >>> seem to be a food allergy chan clan!

> >>>

> >>> LOVE LESLEY,

> >>>

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> Membership of this email support groups does not constitute

> > membership in the

> >>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >>> For information about the CHARGE Syndrome

> >>> Foundation or to become a member (and get the newsletter),

> >>> please contact marion@c<mailto:marion@c>... or visit

> >>> the web site at

http://www.chargesyndrome.org<http://www.chargesyndrome.org/> - for

CHARGE

> > Syndrome Canada

> >>> information and membership, please visit

> > http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or

email

> >>> info@c<mailto:info@c>... .

> >>> 8th International

> >>> CHARGE Syndrome Conference, July, 2007. Information will be

> > available at

> >>> www.chargesyndrome.org<http://www.chargesyndrome.org/> or by

calling 1-.

> >>>

[Guest guest]

doesnt rsv stand for multi resistant staphy been around hosptials to long

its eather that or imune

>

> Kristy

>

> Tyler's RSV is this RSV positive that Amelie has just had as part of

> the brochiolitis, they used that abbreviation?? if so what is the

> RSV standing for???

>

> Cheers my dear

> Lesleyxxxxx

>

>

>

>

>

> > >>

> > >>> Dear All

> > >>>

> > >>> Bl**dy Hell, feel as if i am in hell for sure!!!

> > >>>

> > >>> It must have been the most short lived discharge to date.

> > >>>

> > >>> Last night she was fine happy sats 98 / 99 down to 1.5

> litres o2.

> > >>>

> > >>> This morning i changed her milk like i was instructed to do,

> from

> > >>> neocate to neocate advanced. I think they are more or less

> the

> > > same

> > >>> milk just more calories not sure I think so.

> > >>>

> > >>> Any how she started crying this morning and as i said before

> she

> > >>> rarely cries. it usually is a sign somethings wrong, after

> about

> > > two

> > >>> hours or so she was making retching sounds as if she wanted

> to

> > >>> reflux, and her secretions got heavier and heavier.

> > >>>

> > >>> At 2.45pm she brought down her nose the most huge and

> horrendous

> > >>> thick bright yellow gunk, and i had put her meds in at

> 2.30pm so

> > > i

> > >>> thought definitly reflux and in the car we got back to the

> > > hospital

> > >>> acute ward for assessment.

> > >>>

> > >>> Where it went from bad to worse for us not Amelie!!!!

> > >>>

> > >>> They called the doctor in who was on call for acute referal,

> it

> > > was

> > >>> only the bloke who sent her home the night before she

> literally

> > >>> died , I was horrified, but strangely could not bring myself

> to

> > >>> say ''I am not having you no way!!'' he went crimson in

> colour

> > > and

> > >>> looked as morified as I did, i have to say he was ever so

> nice,

> > > and

> > >>> after he asked me what had happened, his next words were ' I

> WILL

> > >>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A

> PRECAUTION!!!!!!

> > >>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

> > > BEDS IN

> > >>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

> > >>>

> > >>> I insisted they check the position of the j tube incase it

> was

> > > back

> > >>> in the stomach, but its not its fine, the only thing I can

> think

> > > of

> > >>> is the milk, i suspended her feeds at 2.45pm and for the

> last 4

> > >>> hours she hasnt retched once hasnt cried and is very happy

> again

> > >>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

> > >>>

> > >>> the other thing is her poops are very watery, and they have

> been

> > >>> more solid whilst in the jejenum, so maybe a bug or the

> milk, I

> > > dont

> > >>> think she will be in long, hopefully on the ward round

> tomorrow

> > > they

> > >>> will have a plan of action, but in case she aspirated the

> stuff

> > > that

> > >>> came up they might want to check with respiratory as her

> sats are

> > >>> lower this evening not too bad around 89 / 92

> > >>>

> > >>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY

> BIRTHDAY

> > >>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

> > >>>

> > >>> also the EE thing makes me wonder if she is EE rather than

> > > reflux, i

> > >>> hope ENT hurry up I will ask them to check for this EE

> thing, as

> > > we

> > >>> seem to be a food allergy chan clan!

> > >>>

> > >>> LOVE LESLEY,

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>

> > >>> Membership of this email support groups does not constitute

> > > membership in the

> > >>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > >>> For information about the CHARGE Syndrome

> > >>> Foundation or to become a member (and get the newsletter),

> > >>> please contact marion@c<mailto:marion@c>... or visit

> > >>> the web site at

> http://www.chargesyndrome.org<http://www.chargesyndrome.org/> - for

> CHARGE

> > > Syndrome Canada

> > >>> information and membership, please visit

> > > http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or

> email

> > >>> info@c<mailto:info@c>... .

> > >>> 8th International

> > >>> CHARGE Syndrome Conference, July, 2007. Information will be

> > > available at

> > >>> www.chargesyndrome.org<http://www.chargesyndrome.org/> or by

> calling 1-.

> > >>>

[Guest guest]

MRSA is the multi-resistant staph

RSV is respiratory synctial virus - and is a bug hat causes bronchiolotis

and is just bery hard on babies who have other problems, as Amelie well

knows. Time to get this baby home safe and sound and tucked away for the

winter. Do the ENT thing and then HOME!

Kim

> doesnt rsv stand for multi resistant staphy been around hosptials to long

> its eather that or imune

>

>

>>

>> Kristy

>>

>> Tyler's RSV is this RSV positive that Amelie has just had as part of

>> the brochiolitis, they used that abbreviation?? if so what is the

>> RSV standing for???

>>

>> Cheers my dear

>> Lesleyxxxxx

>>

>>

>>

>>

>>

>>>>>

>>>>>> Dear All

>>>>>>

>>>>>> Bl**dy Hell, feel as if i am in hell for sure!!!

>>>>>>

>>>>>> It must have been the most short lived discharge to date.

>>>>>>

>>>>>> Last night she was fine happy sats 98 / 99 down to 1.5

>> litres o2.

>>>>>>

>>>>>> This morning i changed her milk like i was instructed to do,

>> from

>>>>>> neocate to neocate advanced. I think they are more or less

>> the

>>>> same

>>>>>> milk just more calories not sure I think so.

>>>>>>

>>>>>> Any how she started crying this morning and as i said before

>> she

>>>>>> rarely cries. it usually is a sign somethings wrong, after

>> about

>>>> two

>>>>>> hours or so she was making retching sounds as if she wanted

>> to

>>>>>> reflux, and her secretions got heavier and heavier.

>>>>>>

>>>>>> At 2.45pm she brought down her nose the most huge and

>> horrendous

>>>>>> thick bright yellow gunk, and i had put her meds in at

>> 2.30pm so

>>>> i

>>>>>> thought definitly reflux and in the car we got back to the

>>>> hospital

>>>>>> acute ward for assessment.

>>>>>>

>>>>>> Where it went from bad to worse for us not Amelie!!!!

>>>>>>

>>>>>> They called the doctor in who was on call for acute referal,

>> it

>>>> was

>>>>>> only the bloke who sent her home the night before she

>> literally

>>>>>> died , I was horrified, but strangely could not bring myself

>> to

>>>>>> say ''I am not having you no way!!'' he went crimson in

>> colour

>>>> and

>>>>>> looked as morified as I did, i have to say he was ever so

>> nice,

>>>> and

>>>>>> after he asked me what had happened, his next words were ' I

>> WILL

>>>>>> HAVE TO KEEP HER IN OVER NIGHT FOR OBS JUST AS A

>> PRECAUTION!!!!!!

>>>>>> THANK GOD HE LEARNT HIS LESSON, BECAUSE WE KNOW THERE ARE NO

>>>> BEDS IN

>>>>>> THE HOSPITAL, BUT HE MADE SURE AMELIE GOT ONE!!

>>>>>>

>>>>>> I insisted they check the position of the j tube incase it

>> was

>>>> back

>>>>>> in the stomach, but its not its fine, the only thing I can

>> think

>>>> of

>>>>>> is the milk, i suspended her feeds at 2.45pm and for the

>> last 4

>>>>>> hours she hasnt retched once hasnt cried and is very happy

>> again

>>>>>> IF ONLY I NEVER HAD TO FEED HER LIFE WOULD BE SO SWEET!!!!

>>>>>>

>>>>>> the other thing is her poops are very watery, and they have

>> been

>>>>>> more solid whilst in the jejenum, so maybe a bug or the

>> milk, I

>>>> dont

>>>>>> think she will be in long, hopefully on the ward round

>> tomorrow

>>>> they

>>>>>> will have a plan of action, but in case she aspirated the

>> stuff

>>>> that

>>>>>> came up they might want to check with respiratory as her

>> sats are

>>>>>> lower this evening not too bad around 89 / 92

>>>>>>

>>>>>> SO DONT ANYONE CELEBRATE JUST YET SHE'S HANGIN ON FOR MY

>> BIRTHDAY

>>>>>> NEXT WEEK, THE CHEEKY LITTLE MINX SHE IS!!

>>>>>>

>>>>>> also the EE thing makes me wonder if she is EE rather than

>>>> reflux, i

>>>>>> hope ENT hurry up I will ask them to check for this EE

>> thing, as

>>>> we

>>>>>> seem to be a food allergy chan clan!

>>>>>>

>>>>>> LOVE LESLEY,

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>> Membership of this email support groups does not constitute

>>>> membership in the

>>>>>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>>>>>> For information about the CHARGE Syndrome

>>>>>> Foundation or to become a member (and get the newsletter),

>>>>>> please contact marion@c<mailto:marion@c>... or visit

>>>>>> the web site at

>> http://www.chargesyndrome.org<http://www.chargesyndrome.org/> - for

>> CHARGE

>>>> Syndrome Canada

>>>>>> information and membership, please visit

>>>> http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or

>> email

>>>>>> info@c<mailto:info@c>... .

>>>>>> 8th International

>>>>>> CHARGE Syndrome Conference, July, 2007. Information will be

>>>> available at

>>>>>> www.chargesyndrome.org<http://www.chargesyndrome.org/> or by

>> calling 1-.

>>>>>>

[Guest guest]

Lesley,

I have no idea whether this will relate to Amelie, but here goes. MacKenzie

had a G/J tube from 6 months to 3.5 years. During this time she still

continuosly refluxed bile. It was a very thick yellowish/greenish/ sometimes

blackish guck. We drained her stomach with the g portion continuosly. We

attached a feeding bag, making sure the clamp was in the open position and

taped it to the bottom of her IV pole, to allow gravity to help it along.

When we tried to detach her she would retch, choke, stop breathing, etc.

Maybe this is something to keep in mind. This is nothing that the doctors

suggested or even agreed with in some instances, but it worked.

Good luck,

Jeanie