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

[popcornbird]

Awww, Sammy! You must have been so happy to have played with your mom, dad, and Auntie Johanna! Still praying for you. Wonderful news that you haven't had to have dialysis in a whole week! Stay strong, little one! Things will get better soon!

[Cinder & Smoke]

Sorry these are late - we've been a lil busy ...

Friday, July 22, 2005 at 04:45 PM EDT

And we're on the move again...
we have left ICU and are now on a regular medical floor,
where Sam will have her rehab. The powers that be have decided that she really needs close medical attention along w/rehab, so we should finish out our stay at Children's where we're at -- hopefully!!

Sam is still on the antibiotics, and the infectious disease folks will be following her case, making sure they get rid of the bugs; nephrology will also be watching her, but she's under the "primary" care of general pediatrics.

Still no need for dialysis today, so that's encouraging.
Sam has been awake all day--same thing yesterday--and very alert. She fights her midday nap w/all her might, and wiggles around and reaches out for me when she feels herself nodding off. I guess she figures she's spent enough time sleeping these past few months. She's had some of her therapies as well.

I'm sure this latest transition will be tiring for her,
but it could be the final leg of our Children's stay,
so we have our fingers crossed!

Thanks,
Jessica

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Tuesday, July 26, 2005 at 04:30 PM EDT

Sorry for the delay;
All is Well w/Sam, and she's pretty much settled into her new room.

I'd like it to be her last room here, but there's still talk about
moving her back to the rehab floor... who knows.

She still hasn't needed dialysis, so things are okay w/the kidneys right now.
They are doing further studies on them, so we'll know more soon.

The vomiting is still an issue, but it's happening a bit less. Sam is sitting up really well now, and can roll over and pull up into a sitting position on her own. She also likes to pull on her feeding tube, so we really have to watch her.

It's so nice to see her sitting up and playing w/her toys.
They are still weaning her off the meds, but on Saturday night, she experienced some withdrawal, likely from the anti-anxiety med she's been on, and she screamed so loud I could hear her, and I heard "mommy" for the first time in ages! I guess if Sam gets upset enough, she can talk over the trach. I was upset, too, and made sure the docs realized the taper was a bit too quick, and Sam got a small dose to ease her discomfort. She slept until noon on Sunday, after such a hard night. They are continuing to wean her, but keeping close watch for any signs of withdrawal; they have a protocol, but there is no exact science.

Sam's also been having fun playing in the sink, and engaging in one of her old favorite activities--washing her hands! We're seeing lots of smiles from her these days, and her personality is really coming through.

We're also working on reintroducing food & drink. They looked at her airway today, and said it's fine to start working toward removing the trach; apparently, all looks okay in that area, so hopefully we'll have Sam talking again really soon. It would be nice if she could lose the new dialysis catheter soon, too, but they will likely want to wait a few months, just in case she needs dialysis.

So, all in all, we're moving in the right direction.
I'll have some more pics posted soon.

Thanks,
Jessica

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Sitting up, Playing with toys, *Hollerin* for Mom -
sounds like the Lil Kid is back!

Prayers for Continued Progress!!

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[captain]

Fantastic news.

Thanks for keeping us posted Phred!

[Barbara]

I was looking at this thread daily and willing to think that no news is good news

I think it is very exciting that she didn't need dialysis for quite a time now.

I never realized that ant-anxiety drugs were also among the meds she got. Yes of course! What a good thing to do- but of course they have to sneak out of them right now.

It is still unbelievable what medicine can do these days- and now I have the impression that Sammy's steps are getting bigger

[DJFyrewolf36]

I've been gone for a couple of days and am glad to see things are improving! hooray for Sammy!

[luvofallhorses]

I'm glad things seem to be improving, Sammy and family you are still in my thoughts and prayers {{hugs}}

[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.