[tri-med] Kristina's two surgeries... diaphragmatic hernia repair & eye surgery

Hello Everyone:
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Just a very long overdue update on Kristina. Partly to see if any
of you have dealt with any of this and partly to just inform. For
those who don't know us, Krissy is 6 now and has full trisomy 18.
She is g-tube fed and has a trach due to obstructive apnea. She
is a delightful little girl.
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Kristina has been a very busy girl over the last month...
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I know that in the past I've heard someone talk about our kids
(don't know if its T-18 in particular) not closing their eyes
fully when they sleep, not blinking a lot, etc. Well, over the
past couple years Krissy started to develop a white callus on her
left eye. It grew and grew until it finally started to impede her
pupil and could have started to effect her vision. About 6 - 8
months ago her other eye started developing a callus as well. We
have been treating her with Refresh PM ointment 3 - 4 times a
day. Lubricating drops just about every hour when she's up and
Restasis drops to increase tear production.=20
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Nothing slowed the growth so her Ophthalmologist went in and
removed the callus from the left eye about 3 weeks ago. Couldn't
get it all because it was so deep she was afraid she would
puncture the cornea.=20
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Anyway - her eye looks better and seems to feel better. She was
great about leaving the eye alone which definitely surprised me.
I wasn't sure how we would keep her hands out of her eye. She
didn't seem to have any discomfort or pain from it. Had it been
me, I'd have been incredibly dramatic about it!!!=20
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Has anyone else experienced this and if so what have you done?
How did you treat? How is your child's vision?
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Now on to surgery number two...
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About 2 months ago Kristina got the flu was throwing up and
became very dehydrated so we took her to the ER. They did a check
x-ray and accidentally discovered that she has a diaphragmatic
hernia! Not only that, it had perforated and part of her colon
was sitting behind her left long. Not a good place to keep your
colon! They wanted to operated right away but I was certain she'd
probably had it for a while. I pretty much told them, "put down
the knife and step away from the table!" Just kidding - but I
asked that they observe her overnight to see if it was causing
her problems out of the ordinary. She's always thrown up when she
gets a bunch secretions in her throat and trach or when she gets
backed up because of constipation.
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So shorten the story they agreed that since it wasn't causing
problems it could be repaired at any time in the future. We went
home and Krissy was her normal self. We finally decided after her
eye surgery that it was time to get it fixed. Hoping that it
would help her constipation - I figure pooping uphill has got to
be a bit difficult on the system!
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Last Monday she had it repaired. When the surgery was over, the
surgeon told us, "Well, she had all sorts of things up there!" I
was thinking, "her slinky, her beads, a balloon... all her
favorite toys stashed away!!!" Apparently part of her small
intestine and bowel had wandered north as well. Her doctor said,
"Well, those parts are slippery!" I guess her brother has been
holding her upside down too much!=20
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Anyway, she and I spent Monday - Thursday in the hospital. She
was in a lot of pain the first 24 hours but really came through
the surgery like a trooper. It amazes me how strong and resilient
she is. We're home now and she's recovering nicely. Apparently
the surprising thing about this is that it had not been
discovered earlier and that it didn't cause her any pain or
obvious discomfort. The doctor also moved her g-tube while she
was in there because it was resting so close to her ribs and
sometimes leaked underneath.
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Enough from us for now. Would love to hear if anyone has "been
there done that" or is dealing with these things now. By the way,
I do have some recent pictures if anyone is interested.
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All the best,

Terre

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Mom to Kevin - 20, Keith - 17, Kenny - 13, Korey - 12, and
precious

Kristina Rachel (T18) - 6 years - with a smile that lights up the
world!

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Terre Krotzer

terre@xxxxxxxxxxxx

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" There are two ways of spreading light; to be the candle or the

mirror that reflects it."=20

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Show your family how much you care...

Get your Will and Living Will in place today...=20

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