[tri-med] Re: Congestion helps

Thanks for sharing, glad to hear Mari did well with
surgery and good luck with the sleep study. It's so
hard when we just can't figure out how to help them
isn't it? Please keep us posted.

Maya
Mom to Mieko 3/09/04
--- loganfamily <loganfamily@xxxxxxxxxxxxx> wrote:

> Ruth & Maya,
> 
> Mari just had her adenoids out in February.  Her
> airway was so small,
> I couldn't imagine how she had ever been able to
> breathe when she
> had an NG tube!  We decided that oxygen wouldn't
> work for her
> because she'd never keep it on & the airway was too
> small to allow
> it to penetrate.
> 
> Anyway, she did just fine.  She also has major heart
> issues
> (1 cm VSD, ASD, PDA, bicuspid aortic valve).  She
> had trouble
> with desatting also.  We finally convinced the docs
> to let us come
> home after two days.  It was so exhausting trying to
> get each
> nursing shift up to speed on what works for Mari.
> 
> Alot of her desatting issues result in wearing out
> the pulse-ox strap.
> If we put it on her finger or thumb, she thinks
> she's ET and waves
> it about as her favorite toy.  If we put if on her
> big toe, she doesn't
> seem to get as high a readings there & once again
> it's her favorite
> "wrap around your leg toy."
> 
> Her color looked good to us & her activity level was
> very good
> (considering what she'd just been through) so we
> went home.
> Lot's of snot (suctioning every 10 mins. or so) and
> STINKY
> breath for about 3 weeks!
> 
> Her tonsils were almost non-existent, so they left
> them.  We
> repeat her sleep study in three weeks to see the
> improvement.
> We may need to consider some type of jaw surgery if
> we
> don't get a noticeable improvement.
> 
> Chris mama to Mari full T18 (3  yrs.)
> Tipp City, OH
> http://photos.yahoo.com/MissTippCity
> http://home.earthlink.net/~loganfamily/index.html
> 
> 
> ----- Original Message ----- 
> From: "Ruth" <t18mom@xxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent: Sunday, March 13, 2005 8:37 PM
> Subject: [tri-med] Re: Congestion helps
> 
> 
> > Actually, we are about to look into this. It is
> unnerving in the evening
> > (especially since I sleep with Matthew) when he
> snorts and coughs. Surgery
> > is always such a risk for Matthew with his major
> heart issues and last
> time
> > we were in (for palate surgery last July) we were
> there a week instead of
> a
> > night because he also was desaturating. We finally
> got an order to bring
> him
> > home on oxygen. Anyway, I have been wondering if
> he has an obstruction of
> > some type. Keep us posted on Mieko.
> >
> > Ruth, wife to Rudy, mom to Brendon (19), Scott
> (17), Joshua (13), Matthew
> > Rudy
> > (Full T18, born 09/13/01, and Rudy Matthew (born
> 08/13/04)
> > http://members.cox.net/t18mom
> >
> > Lord as I face each new day, grant me power,
> perseverance, patience and
> > peace.
> >
> > > -----Original Message-----
> > > From: tri-med-bounce@xxxxxxxxxxxxx
> > > [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf
> Of Maya Nishikawa
> > > Sent: Sunday, March 13, 2005 2:04 PM
> > > To: tri-med@xxxxxxxxxxxxx
> > > Subject: [tri-med] Re: Congestion helps
> > >
> > >
> > > Mieko has chronic problems with congestion too.
> Nothing seems to
> > > help, so we've gotten used to the snorting. Over
> recent months,
> > > she began desaturating during sleep. Finally, we
> did a sleep
> > > study and discovered she has some kind of
> obstruction  so we are
> > > waiting for her ENT to assess her for surgery.
> I'm not sure if a
> > > sleep study is appropriate for Matthew, but you
> may want to ask about
> it.
> > >
> > > Also, I know some kids on the list have had
> their adenoids out
> > > for this same problem. How did it go? Any
> advice?
> > >
> > > Thanks,
> > > Maya
> > > Mom to Mieko 3/09/04
> > > Ruth <t18mom@xxxxxxx> wrote:
> > > We have kind of a chronic problem with
> congestion (especially at
> > > night) with
> > > Matthew. He is currently on Zyrtec (1/2 tsp)
> twice daily. He is
> > > 20lb 6oz and
> > > is 3 1/2 years old. When he has a cold, we have
> given him Benadryl, but
> > > general antihistamines don't work too well
> because it increases his
> heart
> > > rate. Our ped says that over the counter
> products may do that...whereas
> > > certain prescription drugs will not because they
> are designed not to
> cross
> > > the brain blood (in her words).
> > >
> > > Ruth, wife to Rudy, mom to Brendon (19), Scott
> (17), Joshua (13),
> Matthew
> > > Rudy
> > > (Full T18, born 09/13/01, and Rudy Matthew (born
> 08/13/04)
> > > http://members.cox.net/t18mom
> > >
> > > Lord as I face each new day, grant me power,
> perseverance, patience and
> > > peace.
> > >
> > > > -----Original Message-----
> > > > From: tri-med-bounce@xxxxxxxxxxxxx
> > > > [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf
> Of Loren Warnemuende
> > > > Sent: Saturday, March 12, 2005 12:34 PM
> > > > To: tri-Med@xxxxxxxxxxxxx
> > > > Subject: [tri-med] Congestion helps
> > > >
> > > >
> > > > I know this has been a big conversation topic,
> even recently, but an
> > > > off-list friend with a T18 three-year-old was
> wondering if we had any
> > > > good helps for congestion (particularly in
> relation to colds). Keren
> > > > usually does fine with just saline and
> humidifiers, but I know others
> > > > on the list have some more heavy-duty helps
> for sick kiddos. Could you
> > > > fire off a few in response here?
> > > >
> > > > Thanks!
> > > >
> > > > Loren (wife to Kraig, mom to Keren, T18, two
> years old (9/27/02), and
> > > > new little one due 7/13/05)
> > > > Southeast Michigan
> > > > http://webpages.eng.wayne.edu/~ad6075
> > > >
> > > > Building ___ooOOoo__ Rainbows
> > > > www.trisomyonline.org
> > > > Families Helping Families On-line
> > > >
> > >
> > > Building ___ooOOoo__ Rainbows
> > > www.trisomyonline.org
> > > Families Helping Families On-line
> > >
> > >
> > >
> > > ---------------------------------
> > > Do you Yahoo!?
> > >  Yahoo! Small Business - Try our new resources
> site!
> > >
> > >                   Building ___ooOOoo__ Rainbows
> > >                        www.trisomyonline.org
> > >                   Families Helping Families
> On-line
> > >
> 
=== message truncated ===


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