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

 
I would love pictures!! And this is the first time I heard about the kids
eyes. My grandson sleeps with his eyes open but i attributed that to his
mother doing that when she was small, (which I guess it still could be that
huh?) My email is   saatsmom@xxxxxxxxxxx[1]


               Karen, Julian's grandma, mosaic partial trisomy 1

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From:  "Terre Krotzer" <terrek@xxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  <tri-med@xxxxxxxxxxxxx>
Subject:  [tri-med] Kristina's two surgeries... diaphragmatic hernia repair
&eye surgery
Date:  Sat, 27 May 2006 13:03:34 -0700
>Hello Everyone:
>=20
>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.
>=20
>Kristina has been a very busy girl over the last month...
>=20
>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
>=20
>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
>=20
>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
>=20
>Has anyone else experienced this and if so what have you done?
>How did you treat? How is your child's vision?
>=20
>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.
>=20
>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!
>=20
>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
>=20
>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.
>=20
>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.
>=20
>All the best,
>
>Terre
>
>=20
>
>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!
>
>  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
>Terre Krotzer
>
>terre@xxxxxxxxxxxx
>
>=20
>
>" There are two ways of spreading light; to be the candle or the
>
>mirror that reflects it."=20
>
>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
>
>Show your family how much you care...
>
>Get your Will and Living Will in place today...=20
>
>www.krotzers.com
><file:///C:/Documents%20and%20Settings/Terre%20Krotzer/Applicatio
>n%20Data/Microsoft/Signatures/www.krotzers.com>=20
>
>=20
>=20
>=20
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


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