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

[Karen]

0 July 29, 2005 at 09:41 AM EDT
I will likely not be able to post as much, as Sam is awake more, and I don't like to leave the room when she's awake. For some reason today, though, she's sleeping late. She's been sleepy & crabby the last couple days (not unlike her mother!); this might be a "hangover" of sorts from the scope/anesthesia, or maybe she's just wiped out from being up so much more. She's refusing to try food or drink, but they suspect it's because she has thrush, which can make the throat sore if it spreads; they tried to treat it topically, but she either refused to open her mouth, or just spit it out, so they will start treating by IV today, and hopefully wipe it out soon. We need her to eat & drink, so we can ditch that feeding tube. She will have her trach "downsized" soon, and then capped for a couple days, and if she tolerates that, it will come out. We look for that to happen within the next week; she will move to another floor for that process, where they have more trach experience. Whether she'll remain on that floor or not is anyone's guess. They tried to test kidney function, but couldn't find a vein, and the other option was to put a catheter back in for 24 hours, but she was feeling pretty lousy at the time, so I had them wait on that; I guess they'll have to do something at some point, though, to see how the kidneys are doing--she still hasn't had any dialysis. Overall, she's doing okay, and perked up later last night when Daddy brought her a new coloring book & crayons, a puzzle and a new truck. I'm hoping when she wakes up today, she's back to her happy self.
Thanks,
Jessica

That's the best reason - being with an awake and happy Sammy is way more important than posting updates!

Thrush is awful - it makes food tasteless - so that's probably why she doesn't want to eat. According to my old neighbor, it makes everything taste blander than bland, like you're eating cardboard. Bleaaagh. Sammy has my sympathy!

[popcornbird]

Still sending lots of love, prayers, and hugs Sammy's way!

[Barbara]

*looks up thrush in the dictionary*- oh no - that doesn't help with eating.

I think it is absolutely ok if poor Sammy has a bad day - we cannot even imagine what she's gone through and we all adults would be much worse!

[gini]

Bless her heart - overall though, it sounds as though good progress is being made.............wanting Mom - loving Dad's gifts, no dialysis...............we will keep right on praying for Sammy!

[Cinder & Smoke]

Monday, August 01, 2005 at 11:48 AM EDT

Hello.
We've moved again, back to the B building, 5th floor,
where they deal w/trachs.
They will work on getting Sam's trach out this week,
and if all goes well, we'll return to the A building.

Sam had some sleepy/crabby days,
but was pretty perky this morning.
Aunt Johanna will be posting some new pics soon.

The vomiting is still an issue, unfortunately, but otherwise she's doing pretty well. She needs to start eating/drinking (so far, she's just sipping Sprite), get off the meds, and have a kidney plan figured out, and
then maybe we can go home.
The rehab dept. seems to think she can handle most of it as an outpatient, so that won't keep her in the hospital. Her kidney function is being assessed again, and maybe then they'll have some idea of just how they're doing.

That's it for now;
send prayers Sam's way for these final issues to be resolved.

Thanks,
Jessica

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Wonder if Sammy gets Frequent Flyer Miles?
Good Luck with *ditching* the Trach!!

And **GO, Kidnies**!!

Prayers Continue!

[Barbara]

I think she is now without a dialysis for quite some time!

And it's time that trach thing is getting out. I hope that in consequence her little stomach will calm down.

It's the last miles of a marathon and we know you can do it Sammy

[Cinder & Smoke]

From the Hospital CarePage ...

Monday, August 01, 2005 at 12:06 PM EDT

This is Johanna,
just to let everyone know I did post some new pictures of Sam.

The difference in Sam from those early weeks in the hospital-
from the physical to the emotional- hopefully comes through in the photographs.

Even though she was a bit sleepy when I visited this morning,
I can see the "real" Sam shining through, finally.
She is sitting on her own,
has some little cars and trucks to play with,
shows her displeasure at times with the procedures (he he he),
and her smile.....so precious!

[Cinder & Smoke]

HI, Pet Talkers ... Sammy here >>>



Hey ... I'ts "almost" a **SMILE** ...
I'm workin on it!!

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Daddy and Me ...



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Nappie-Time on Daddy!



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Mommy has a good lap, too!!



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Photo Credits to Auntie Johanna -
Thanks, Joh!!

[lizbud]

God bless this little child and may He grant her a long and
happy life. Hope you're feeling a little better each & every
day Samantha.

[popcornbird]

Little Sammy, you look sooooooooo precious in that pretty dress!!! Hugs and kisses and lots of prayers being sent your way. How wonderful to hear to words, "Then maybe we can go home" from your mommy! I don't think we could ever thank God enough for bringing you this far. May He ALWAYS take care of you, and bless you with a long life, full of love and happiness.

[Barbara]

I think you are tired, little girl, but I can also see some mischief coming back- and that looks like a wonderful thing to me

[shais_mom]

bless her little heart...

[Cinder & Smoke]

Wednesday, August 03, 2005 at 12:58 PM EDT

Hello; I'll try to post while Sam is napping.

Her trach was downsized and capped, and should come out entirely tonight or tomorrow morning. So far she's doing well w/the transition. They are stopping her feeds for hours at a time, in the hopes that she'll begin eating by mouth; they are also stopping them before & after meds, in the hopes that will curb some of the vomiting, which is still a problem. (She often vomits after she gets her meds.)

Sam was officially given "out of room" privileges Monday,
w/restrictions, of course, as she's still in isolation. (We do follow some of the rules.) She's been in lots of wagon rides out to the play deck on our floor, and she's enjoying that. It was her first time outside since early May; she was wearing her sunglasses, and looked very Hollywood, according to the staff.
There are only 2 things she's interested in now: wagon rides and Sprite,
which she now drinks from a big-girl cup, as she has boycotted the sippy lid.
The thrush seems to be clearing, as she's opening her mouth again, and ate a little apple sauce today.

She's also speaking;
today she said "please" when she wanted more Sprite. (She's also crying again at full volume! Never thought I'd be happy to hear that sound.)

The plastic surgeon saw her during a wagon ride, and checked her over in the wagon, and said the skin looks great. A finger on her left hand is tightening, though, and soon she will start wearing a splint on it at night, so she doesn't lose any range of motion there.

Her meds are continuing to be tapered, and she should be off them by 8/21, if all goes according to schedule. We should move back over to the A bldg. by the weekend, after the trach is out and she's been observed a couple days.

Some not-so-good news:
pseudomonas is back in the stool, and
her kidney test results showed that function is pretty weak, and she's likely looking at long-term dialysis. This is disappointing, though not totally unexpected. Her kidneys took such a hard hit during this illness.

Thanks for the continued prayers,
Jessica

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Wagon Rides
FASTER, Mommy ... Go Faster!

Glad there's some GOOD News to pass around!!

**GO*, Sammy!

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[Barbara]

Sammy- that sounds as if the good life slowly is coming back. Sprite and wagon rides.

Way to go.

[popcornbird]

Awww, Sammy! I would love to hear you say, "Please"!!! What a polite little girl! Keep getting better. You are always in my prayers.