Waiting for Sandy Klaws ...
Christmas Eve, December 24, 2005 at 06:25 PM EST
Sam's more alert every day.
Today we sang "Jingle Bells" to her, and she supplied the "hey!",
which is her favorite part.
She enjoyed Barney videos and Christmas visits from some of our family;
Mom and Dad enjoyed the food! (We enjoyed the company, too.)
Sam drank a little juice today, which is a start,
but we still have lots of work to do in that area.
She's napping now, hopefully dreaming of candy canes and reindeer.
Wishing everyone a nice Christmas Eve,
Jessica
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Wishing Sammy, Jessica and Rob a Joyus Christmas!
Sing it again, Sammy ... "Jingle Bells, Jingle Bells ..."
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Sammy had a Good Christmas!
Christmas Day, December 25, 2005 at 06:26 PM EST
Merry Christmas, everyone. Sam slept late again,
but woke up in time for Grandma's visit,
and Mom and Dad had a nice Christmas dinner. S
Sam's a little quieter today, but still alert, and
smiling away at her Barney videos.
She opened a few gifts today, but still has gifts waiting at home for her
to enjoy when she's fully recovered.
They put the feeding tube back in today, and will start the feeds later;
we really couldn't wait any longer, and the nutrition is critical to her recovery.
Hopefully this will be short-term, and that once whatever throat issue
she has resolves, she'll eat again.
She still drools during the day, but we've noticed that when she's sleeping,
she's swallowing. It's possible there's a psychological component at work here,
and once she's home and more relaxed in her normal environment,
she can get back to "normal" things.
The immunologist stopped by, but he said he probably won't have more
results until mid-week; he also let us know he'll be consulting
w/the genetics dept. re: a chromosome study.
It's possible we'll move back to the floor tomorrow.
Hope everyone's holiday was happy;
thanks for all the Christmas wishes for Sam!
Jessica
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Thanks God, for sending Santy Claws to Sammy's room!
http://petoftheday.com/i/our_smilies/smile.gif
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Sammy is *out* of PICU and Closer to HOME
Monday, December 26, 2005 at 01:37 PM EST
We're back in A6 South.
Sam is tolerating her feeds well, which is good;
this will help get the belly back in gear.
Her BP is still running a bit high at times, so she's getting some meds
for that -- it's likely kidney-related.
Her mental status continues to improve daily.
Her antibiotics are finished, so the central line will be coming out soon;
right now they're still using it for some meds, so she doesn't have to
take them all orally, which would probably make her vomit.
And yes, Chantelle, tell Quinlan that Santa is amazingly flexible --
Sam has gifts waiting at home, plus received some here,
including a couple Barbie dolls, a big Pooh bear, miniature horses,
Weebles, cars, books, an outfit, and Lego Mega blocks.
Let's hope Sam has a short, uneventful stay in Building A,
so we can go home.
Thanks,
Jessica
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http://petoftheday.com/i/our_smilies/cool.gif
Sounds like Santa brough a sleigh-full to Sammy's room!!
Prayers that the stay in A6 is short and gets you ready for
the Trip HOME!
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Sammy has a "Hall Pass" - Enjoys Stroller Trips ...
Saturday, December 27, 2005 at 07:28 PM EST
Sam continues on that road to improvement;
she's much more alert and responsive now,
though still not quite back to her usual SuperSam self.
She greeted me w/a "Hi, Mom," when she woke up today at the crack of noon.
(I'm not sure if she's now calling me "mom,"
or if she's only doing half of "mama" during her recovery phase!)
No big news on the immunology front;
the complement part he was looking at checked out normal,
and other results aren't in yet, due to the holidays.
The genetics dept. is now in the game
(will there be a dept. we don't see in Children's?? )
and will be sending some bloodwork out of state for more tests --
there's a doc in Colorado, I think, who's going to take a look.
(They will be checking to make sure this isn't a certain subtype
of her platelet defect that's linked to immune system problems.
The doc at the NIH doesn't think it is. Anyway ...)
Her central line should come out tomorrow morning,
after everyone's had a chance to draw their labs.
She's tolerating the feeds really well, so she will go home on the tube
for a while, until we get her eating again.
She's drinking a little by cup.
She's allowed out of her room now, so we brought her stroller up,
and take her downstairs a lot ... nothing really exciting down there,
but it sure beats this room!
We're really hoping to be out of here before '06,
so think some happy new year thoughts for us.
Thanks,
Jessica
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*Home* for New Year's sounds good ...
We'll ask God to try to schedule that for Sammy! ;)
Sammy is geting ready to *slip out the door* for HOME!
Wednesday, December 28, 2005 at 03:19 PM EST
Sam's napping now; she was actually up by 9 today,
as the OT came in to work with her.
They're removing her central line momentarily,
so her nap will come to an abrupt end.
We strolled around downstairs today, which she really enjoyed.
She's been babbling quite a bit, and smiling a lot, which is wonderful to see.
She's still holding saliva in her mouth, though, which is an obstacle to
both talking and eating; hopefully once we're home, that'll resolve. ..
And we might be going home tomorrow! http://petoftheday.com/i/our_smilies/biggrin.gif
It's not definite yet, but it's the latest word;
I suppose if they change their minds, we can just stroll on out --
it's not like we don't know where all the exits are.
All immunology work thus far has come back normal.
They are going to look at a few more things -- really unusual stuff --
as most of what they typically see insofar as immune dysfunction has been ruled out. The genetics testing will take some time, so we likely won't know anything for a while, unless, of course, they're looking for the cuteness gene!!!
We're very sure that one's dominant in Sam! (Our unbiased opinion, naturally.)
Sam had her first set of kidney labs done by finger stick today,
and hopefully it will match up w/labs pulled from her line,
as after today, she won't have a line anymore.
We'll still be seeing our kidney friends regularly after discharge.
Well, that's the latest ...
hopefully I'll be typing my next update from the heart of Brown County, OH.
Thanks,
Jessica
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We'll all Pray that Sammy is HOMEward Bound tomorrow!
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Surely would love to have the best news yet....
As I am sure everyone would..... I am putting my money on Sammy and family being home today, for the weekend and to start the new year off on a positive note. I surely hope my dream comes true for them. Gosh.
I think if we could "buy" good health for little Sammy, she would have a million dollars from all of us, in five minutes.
Here's to 2006!
Sammy is ***HOME*** for the New Year!!
:)
Friday, December 30, 2005 at 08:54 PM EST
Sam's had a good first day at home;
she slept through the night last night,
and didn't wake up until nearly 11:00 this morning!
I spent the morning catching up on nearly 3 weeks of housework,
but it sure beats being at the hospital.
It was so nice to peek in her crib and see Sam curled up on her side,
snoozing away. She's enjoying lots of new toys,
and she's been sipping juice, and even had a bowl of Honeycombs.
We are still going to supplement her diet w/her formula,
and have her "on the tube" overnight,
but let her eat and drink whatever she will during the day.
I was pleasantly surprised that she was willing & able to eat by mouth
her first day home; the drooling has stopped, so that could be a factor --
I noticed that it had nearly stopped her last day at Children's.
She's more and more herself each day.
I think she's just resting up for all the great things she has planned for '06!
Thanks,
Jessica
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HOME, Sweet HOME!!
:D
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