Johanna (Cataholic) & Sister Jessica continue to Request Prayers for young Samantha

[AmberLee]

Any new updates?

Anxiously,
A.

[Barbara]

Anyway- that's good updates. I think it is obvious that any infection will attack Sammy much much more than any healthy child who has not gone through so much in the last year.

Our thoughts are with you all the time.

[Cinder & Smoke]

Wednesday, December 21, 2005 at 01:41 PM EST


One word yesterday, two today:
"Wiggle" (a Wiggles ad was on TV), and
"Barney," when her "I love you" Barney was singing to her.

She appears a little less glassy-eyed. Right now I have her sitting up,
propped on pillows, and an OT was working w/her, stretching her arms;
PT will work w/her, too, to get her moving around again.

She had a slight fever this morning, so just to be on the safe side,
they're culturing for infection. Immunology came by, and the doc's been
reviewing her blood counts/bloodwork over the last year, and he thinks
something might be up w/her white blood cells -- her lymphocytes,
specifically. They will be sending bloodwork to the lab, and we hope
to know something a little more conclusive within a few days.

Please pray that anything they find is of the minor variety --
Sam has enough on her plate.

Otherwise, we are just watching and waiting.

Thanks,

Jessica
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We're all Watching, Waiting, and Praying right along with you!
Come on, Sammy - Time to Get Better!

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[Barbara]

Oh that is something to keep fingers crossed about. I hope so much all these lymphocytes are just a little varying....

[Cinder & Smoke]

"Daddy!"



December 21, 2005 at 04:31 PM EST



Well, three words ... when Daddy came in after work,
she cried out, "Daddy!"


So we have the Wiggles, Barney and Daddy ...
could Mama be next?


I'm going to be upset if it's "Baby Bop."

/s/ Jessica (aka Mommy)

[Cinder & Smoke]

Wednesday, December 21, 2005 at 07:53 PM EST


Yes, three updates in one day...it's been a busy one.
Around 5:00, Sam started throwing a HUGE fit,
complete w/screaming and flailing.


They had to bandage her stumps, as she was kicking and thrashing
so much, scabs broke and she started bleeding quite a bit.

This went on for a good 30-45 minutes; she was not easy to sedate.
It seemed like fear/anxiety to us,
but she's likely in some discomfort as well.


They wound up calling one of her ICU docs down to take a look;
he suggested blood pressure meds, as her BP was getting a bit high,
lasix, a chest x-ray and a blood transfusion,
as she's been seeping a bit from the wounds.

Hopefully the x-ray shows nothing.


She's quiet now, but not sleeping -- she's huddled under her red
blanket, looking quite mad.

It was a very unpleasant thing to see --
it took 3 people just to hold her down
while a plastics doc bandaged her up.
(We were helping, but it didn't comfort her at all.)


We don't know if this means she's really coming out of it,
and realizing where she is, or if something else is going on;
the ICU doc doesn't think it's any type of withdrawal from sedation
or anything, and neuro says it's not a typical response
to the removal of an anti-seizure med.


So....more waiting and wondering.

Let's hope Sam sleeps soundly and peacefully tonight.


Thanks,


Jessica

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Prayers for a quiet, restful night;
and a Better Day tomorrow.

{{{Hugs}}} for Sammy, Jessica, and Rob.

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[jenluckenbach]

How frightening and sad. More prayers for you, Samantha.