[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

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