[tri-med] Re: continous feeds

penny said the same thing about devon-makes me wonder.  were there no signs 
of infection at all?  was it only apparent at night or did he cry all the 
time or just at night?  we are getting desperate here.  thankfully we are 
starting to get shift nurses a couple of nights a week.  thanks for the 
help.

pam, darrell,tyler t13m, kira 2.5
elora ontario

Original Message ----- 
From: <verheyen@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, November 27, 2004 6:30 AM
Subject: [tri-med] Re: continous feeds


> Pam, Cody also would cry for hours at a time.  His problem....his ears!! 
> When he was three months old he was to have his first foot operated on and 
> we ended up in the hospital instead for two weeks with his ears.  The 
> E.N.T. truly believes he was born with ear infections.  After 10 days of 
> being on meds through and intervenous, they put in tubes and he was still 
> full of infection.  Cody has had 7 sets of tubes but for the past two 
> years has had holes in both ear drums and we are afraid to fix them 
> because it is working so well.  I would ask that they give his ears a real 
> good going over.  The first two doctors could not see the infection 
> because his canals are sooooo tiny.  The E.N.T had to hunt for a very tiny 
> instrument.  So once he got his tubes he slept a whole lot better.
> Tracy mom to Cody (Trisomy 9p)
> -------------- Original message -------------- 
>
>> good morning!(at least in my time zone)
>> we finally got some sleep as we had a shift nurse all night. tyler has 
>> been up
>> at night starting at about 3am for quite a while-this means heavy sleep
>> deprivation for darrell and i normally. we think maybe he is not doing 
>> well on
>> a continuous feed. he gets 27l mls an hour from 11pm to 7 am. our 
>> question is
>> this- has anyone else had trouble with continous feeds causing excess gas 
>> and/or
>> wakefullness? we really need to resolve this issue as we all need some 
>> rest.
>> it is also less than healthy for tyler to cry for hours as he begins to
>> desaturate and causes us to use the dreaded chloral hydrate to slow him 
>> down a
>> bit. he is crying for hours at a time. i am sure a number of you can 
>> relate to
>> how difficult it is to see your child in such distress for hours at a 
>> time. any
>> feedback would be appreciated
>> thanks
>> pam darrell, tyler t13m, kira 2.5
>> elora ontario
>> Building ___ooOOoo__ Rainbows
>> www.trisomyonline.org
>> Families Helping Families On-line
>>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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