[tri-med] Re: Congestion helps

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

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                       www.trisomyonline.org
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