> > They discourage the
> > parent(s) to stay in this hospital, so I had to leave her overnight

What ancient establishment are you going to.  That is an outrage that
you can't stay with your child.  It is a proven fact that children
recover better with their parents with them.

We never left Michelle in any of the hospitals she was in.  I even slept
across a few hard chairs to be in her room when she was a baby.  I slept
right in her bed with her when she was 4 years old having another
cranial surgery.  She did so well knowing she could feel me right next
to her since she couldn't see with all of the bandages.  Even when she
was in the ICU they had parent rooms to sleep in so you didn't have to
leave the hospital.

INSIST ON IT.  GO TO THE TOP IF YOU HAVE TO.  This is YOUR child and not
the hospital's so YOU have the final say.

I'll get off my pedestal now.

Christine Clark
=========================================================================
Date:         Tue, 29 Sep 1998 10:51:02 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Christine Clark <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject:      Re: sleep study
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Beth,

Did Tim have a submucous cleft and/or bifid uvula?  I've been told these
factors are what influence speech after a T&A.

Christine
(Still in lock-up at UCSF but through with the chemo and I received my
stem cells back yesterday - so far so good!)
 

ETolson643@AOL.COM wrote:
>
> Tim was 14 when he had his midface advancement.  The removal of the
> adenoids
> and tonsils didn't affect his speech either way.
>
> Beth in Boston
=========================================================================
Date:         Wed, 30 Sep 1998 07:55:34 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jenngram@AOL.COM
Subject:      Re: sleep study
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Christine,

Glad to hear things are progressing....we'll keep you in our thoughts and
prayers

Glad Seth is recovering well....I was suprised at how quickly his mid-face was
completed..looks like we may be looking at the same procedure down the road
when Jordan is older. We had a brief discussion w/ the surgeon when we changed
his bandages from his index finger.

Hope Zoey is doing better, we'll cross our fingers she is home soon. Hospital
stress is enough to land mom and dad in there, just when its time for the baby
to come home. I often think of starting a time share at our local Childrens
hospital w/ other parents who have kids in there as often as we do!!!

Hope everyone else is doing well

Jenn(Tampa/St. Pete...where Hurrican Georges never made it..despite
evacuations we didn't even get any rain. Now, our family in New Orleans and
Mobile on the other hand decided to rent their houses out as luxery cruise
liners)
=========================================================================
Date:         Wed, 30 Sep 1998 09:45:31 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ETolson643@AOL.COM
Subject:      Re: cleft palate....parents staying with children
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Christine

Happy to hear your bloodwork looks good!!!!!  On the palate...Tim's was a
submucous cleft.  On the hospital stay...I, too, find it hard to believe that
there are still hospitals that don't let parents stay.  Children's in Boston
not only let's you stay....but really prefers it.  In ICU there is a separate
room for parents.  On the regular floor, all chairs pull out to a twin size
bed.  Even though Tim is almost 17 (!!!)  we still make sure that one of us
stays with him at all times...for his comfort and ours.  The hospital staff
has always been wonderful with us and I think they feel better knowing that we
will be able to keep closer track of him than is possible for them.

Keeping our fingers crossed for you Christine...been thinking of you.

Beth Tolson
=========================================================================
Date:         Wed, 30 Sep 1998 10:29:02 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      It's Over and We are Home
Mime-Version: 1.0
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>Dear friends,  I'm up early this wednesday morning so I can offer an update
on EvaJessie's surgery.
>
>At day 4 post-op, EvaJessie seems to be doing really well.  As we expected,
the swelling peaked at day three and the bruising showed up.  Her left side
is not only puffy but green, purple and yellow.  Her left upper eyelid is
swollen out past her nose in profile.  She can open her left eye a bit and
the right eye is now fully open.  She saw herself in a mirror and says its
ugly.  She's reacting also to the stitches all over her face  and her skull,
although the cranial incision isn't as extensive as it was last summer.
This time, it only goes from her left ear to the top of her head.  My
challenge for the next few days is to keep her occupied because she isn't
allowed back at school until Monday.
>
>Her first two days post-op were fairly good, although she was cranky (no
big surprise).  She had quite a bit of nausea this time, and it wasn't until
late on day 2 that she really started to eat anything of consequence.  Prior
to that anything that went in, came out again very quickly.  But Monday
morning, she woke up being goofy as is her nature.  So her IV came out, and
also the drain in her scalp.  That was really hard and hurt her a lot.  I
had to hold her down for that unfortunately and she screamed for the 5
minutes that it took to get it done.  The drain was really long (or so it
seemed to me).  About the size of a drinking straw and nearly as long buried
beneath her scalp and running down to her cheek to help reduce the swelling
and fluids that accumulate there because of the way the tissues were
manipulated.  ONce that was done, she was a free kid, and there was almost
no keeping up with her.  She was quite happy to go to the playroom (fully
staffed by the ChildLife people) while I ran errands in other parts of the
hospital.  She was really ticked over having to have another blood draw (why
does the lab come so EARLY in the morning--- and what a heck of a way to
start your day -- with a  stick from the blood tech.)   The first day they
came, I sent them away.  Then I asked the nurses to do an Emla patch for the
next morning so we could do the test.  Doug (her surgeon) said it was just
to check her blood counts in case she needed iron supplements, but in fact,
her counts were right in range.  She didn't lose much blood with this
surgery, so that was good.
>
 The surgeon used a small strip of bone to sculpt and graft onto the lower
orbit and augment her cheekbone where the cleft split it apart.  He also
found the muscle that runs parallel beneath the eye  and reattached it to
the inside corner of the eyelid where it belongs.  For those of you who have
seen the palate video, you'll know how the muscle is split and runs up and
down along the cleft.  Well, it was a similar situation here.  That muscle
went south along the split instead of across beneath the eye.  He
overcorrected the lift for the eyelid at the outside corner in anticipation
of scar contracture.  The suture lines are all placed in the natural lines
of the face.
>
>For the first time in her life, EvaJessie has a lovely smooth cheek and can
close her eyelid fully.
>
>Talk about staged reconstruction:  Doug says he'll be able to do more with
the upper lid later; EvaJessie has a bit too much soft tissue in her left
upper lid relative to the right upper lid.  This will be corrected when she
is older.
>
>He wasn't able to do anything with the lip which disappointed me.  There is
a small notch in her lip and it is also quite lopsided, but that will have
to wait until later when they will have to rotate the entire structure to
get the results wanted.
>
>As some of you may know, we had a dress rehearsal for this surgery a couple
of weeks ago.  Everything went perfectly that time except they had to cancel
the surgery after she was already on the table.  This time was the same
pre-op situation:  she was so good.  She took her midazolam (Versed to you
folks in the States) without a fuss and sat down to watch a video with me.
I carried her into the OR and stayed while they started her IV and gave her
the knock out drugs. She was sitting up on the table talking and blowing
bubbles with the nurses -- not totally without apprehension, but calmly
enough I thought. She sure made it easy on us. She has really come to the
table (pardon the pun) on this one.  I couldn't ask her to do it again soon.
 ANd we couldn't have asked for a better surgical experience.  Everything
went just like we planned. She seems to have a good understanding of how,
where and why Doctor Doug made the cuts and moved the bone.  And she
understands that her balloon is gone and it was all worth it.   She doesn't
complain much about pain.  Hasn't had anything but Tylenol since they
removed the morphine drip.
>
>Well, must go and get brekky for the kiddos.  Another new sunrise here.
Gee it's good to be home.
>
>Thanks for all your well wishes.  And thanks for listening.
>Pat and EvaJessie (you'd never know to look at her that she was born with a
big split in her face.  It's amazing!)
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of the shore
for a very long time.  Andre Gide
=========================================================================
Date:         Wed, 30 Sep 1998 15:50:43 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         foster <foster@ICONTECH.COM>
Subject:      Over&home
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Just wanted to let you know how pleased we are to hear that EvaJessie is
back home and doing well.
She is a terrific child and very brave. Mom and Dad must be very proud. Hope
she continues to do well and goes back to school soon so she can be with her
friends again.

The Fosters(PA)
=========================================================================
Date:         Wed, 30 Sep 1998 20:39:59 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Nodrmat26@AOL.COM
Subject:      Re: Zoey is Hospital
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Christine~

To be completely honest, although they discourage parents staying with their
kids in the ICU, they don't prohibit it, so I could stay.  I could probably
get a blow-up mattress and stick it in the corner.  And everytime Zoey's
admitted, I am determined to stay with her.  Then I get to feeling guilty over
leaving my 5 year, Tia.  They both need me.  I sit with Zoey all day while
Grandma gets Tia ready for school, brings her to school, takes care of her
after school, feeds her dinner, gets her bathed and into bed.  One night
wouldn't be bad, but Zoey's now been in for almost a week now.  If I stay with
Zoey, I feel guilty, so I choose to go home and I feel guilty leaving her.
Either way, I don't feel good.  So, to keep myself sane, I take Tia to school
in the morning, go up to the hospital right after, sit with Zoey all day long
and I'm home by 9 pm to read Tia a book and put her to bed.  Sometimes, my Mom
takes over at the hospital so that I can spend some more time with Tia.
Sometimes (let me stress SOMETIMES) I wish I did have a husband to help.  Then
I'd make him spend the night at the hospital, while I did day shifts.  But
then I slap myself and remember how lucky I am to be free.  :o)
Sorry this is so long, guess I'm trying to convince myself that I'm doing the
best I can.  Thanks all for listening.
Christina
San ANtonio
=========================================================================
Date:         Wed, 30 Sep 1998 20:55:53 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         Nodrmat26@AOL.COM
Subject:      Re: Over&home
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I'm happy to hear that EvaJessie's surgery went well.  Hooray!

Update on Zoey.  Still the hospital, it's Wednesday.  Yesterday, I was quite
upset when they made her NPO (nothing by mouth), added another IV for
terbuteline (sp?), and added atrovent to her regemine (sp?).  She's already on
continuous albuterol nebs, which I don't like, then to add more medicine to it
AND not let her eat, I was fussing all day at everyone who walked in the room.
I figure if I bothered enough people, the chief of the PICU would break down
and give in.  No such luck, this doc was a rock.  FINALLY, this morning, they
let her drink some apple juice, which wasn't enough for her, so she was still
fussy.  Then, at 5 pm today, they let her go ahead with whatever she wanted to
eat.  She sucked down 8 ozs of Pediasure, a whole jar of babyfood and then an
hour later drank another 7 ozs of Pediasure.  She was so happy, that everytime
she took a breath, she looked up at my and smiled her sweet smile and I almost
cried.  She's doing better today and I'm hopeful that she will be home this
week.  Another note on the leaving her there by herself thing.  She's got
great nurses whom I already know.  When she has a  new nurse, I'll sit and
talk to them and ask them tons of questions and if they make me uneasy, I'd
sleep right in her bed with her.  I've been (Zoey's been) really lucky and
they put the non-friendly nurses on during the day, and I stay there with her
until they're gone.  .....still trying to convince myself.....
Goodnight all,
CHristina
San ANtonio
=========================================================================
Date:         Wed, 30 Sep 1998 21:12:55 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         ETolson643@AOL.COM
Subject:      Re: It's Over and We are Home
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Pat

Ah....that wonderful, wonderful feeling of being home again...I think we all
can identify with that!!!!  Glad to hear that things went so well!!!!

Beth in Boston
=========================================================================
Date:         Wed, 30 Sep 1998 20:34:28 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Christine Clark <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject:      Re: Zoey is Hospital
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> Sorry this is so long, guess I'm trying to convince myself that I'm
> doing the
> best I can.  Thanks all for listening.
> Christina
> San ANtonio

        YOU ARE DOING YOUR BEST AND NEVER DOUBT IT!!  Keep up the good work!!

Christine