[tri-med] Re: Hannah in the hospital

Sounds like you are one of the annoying know-it-all mothers doctors
despise!  WTG!  Have you researched the different kind of G-tubes?  We
have the Bard and I love it--I don't have to change it, and we haven't
had to go see her GI for going on 3 years with any problems.  I have
however, talked to some parents who have hated the Bard.  There is also
the Mic-key, which most have, and there are some definite benefits.  I
would suggest doing research and asking the group about pros & cons, and
making sure your doctor goes over both with you.

Jennifer, mom to Elanor-4!, full T18; and Arwen-6; caregiver to Joe-25
cerebral palsy & spastic dysplasia; wife to Andrew-32 and wonderful! 
Boise, Idaho USA


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Janet Leigh King
Sent: Monday, January 26, 2004 4:50 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Hannah in the hospital

Yesterday we ended up taking Hannah to the ER at Children's Hospital as
she 
had been lethargic all day and had only had about 7 ounces of formula by
4 
pm (in two feedings via tube) and threw up after each. The second time
you 
would have swore she had an empty stomach as it looked like just stomach

bile. She also started to choke after the second one and Donn thought he

heard extra rattling in one of her lungs and with the swallow test 
confirming aspiration we wanted to be safe. Turns out that her lungs are
ok 
but she had a possible bladder/kidney infection so they admitted her. 
Because of her history this turned out to be good as the attending phy. 
ordered consults with the pulmonary doc (whom we weren't scheduled to
see 
until Feb 27!), the GI we just saw on Friday, the ENT we saw last Monday

and the Pediatric Surgeon we were scheduled to see in two weeks about
the 
G-tube and Nissen.
I saw the surgeon this morning and he agrees that she would benefit from

the G-tube and is talking about doing it this week, late in the week.
The 
GI doc has ordered the gastric emptying test and that will be done
before 
the surgery.

I also saw the Pulmonary guy and really liked him until he told me that 
they had full T-14 children that did great on the tube and had no
problems. 
What the doc doesn't know (No, I didn't say anything. I was in shock.)
is 
that I have done my research and I know that he probably has never seen
a 
full, mosaic or mosaic partial T-14 child in his entire life! (Right, 
Michelle???) And I'd be willing to bet I know more about T-14 than he
does 
and that's not an awful lot yet. But at least I'm learning! I'm very
glad 
he isn't really going to be any more involved this point. I was seething
by 
the time Donn got back to the hospital.

So they are treating the infection (the culture came back positive) and
we 
are looking at probably being there until mid week, next week.

Any questions I should ask about the surgery???


Janet and Donnell King
Parents of Hannah Emily - 5-6-03 - Trisomy 14 Mosaic Partial
Also Amanda, Jon, Zach and Caty, who are just as special.

for updates on the family, including news on Hannah Emily, go to 
http://kinglynews.blogspot.com
(latest update January 24th)  

                  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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