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

:)

Thursday, July 14, 2005 at 04:45 PM EDT

Sam had a better night last night,
and hasn't vomited since early this morning.
She did very well w/her therapies today, and was quite tired--she napped nearly 3 hours!! She was very enthusiastic about brushing her teeth. While she napped, she moved around a lot, and actually slept on her side for a while; it's nice to see her sleeping in normal positions, instead of the standard flat-on-her-back hospital pose.

Tomorrow she has 2 procedures --
a new central line will be put in (in her arm this time), and
they will remove the existing one(by her neck -- a very scary-looking one, as it's always pulling out), as they think it's a problem insofar as infections. Some kind of germ is showing up again in tests, and they definitely don't want that spreading. She's been back on a couple antibiotics the last day or 2, so they're quite anxious to get that old line out, too, as they think it might be the culprit.

In the afternoon, a new catheter for dialysis will be put in, too, and should make dialysis easier. Of course, the nephrologists are hoping she won't need that for too long.

Sam's working on sitting up :) ; I took a couple pics of her in therapy today, and one of her dancing with her daddy, so I will try and have those posted soon.

Send prayers for Sam's big day tomorrow; hopefully some of her other issues will resolve themselves when they get these lines "cleaned up."

Thanks,
Jessica

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Sounds like *Progress* on all fronts!
Good Luk with the Sir Juries tomorrow!

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Good luck Sammy with those sir juries tomorow! Glad you had a better day today :D

I find that I can't keep myself away from this thread. Its wierd (in a good way!) that I care so much about a little girl and her family that I don't know in person. One of these days, I would absolutely love to meet Sammy and her parents. I am so in awe at how strong you guys really are and at the overwhelming care that the PT folks have shown.

There is really some good in this world!

Prayers that everything goes well for you little Sammy!!! AND, lots of hugs and kisses to you too! Stay strong, and keep getting better!

Keep my fingers crossed. This sounds like an important day:)

:)

Friday, July 15, 2005 at 04:28 PM EDT

Another good night for Sam, and a good morning as well.
She did great in therapy today.

I brought in her favorite bag of little toys from home, and she enjoyed seeing them again, reaching out and grabbing them, etc. I brought in one of her sippy cups as well, and she reached right out and grabbed it w/both hands, stuck it in her mouth, and tried to drink -- suspecting it was empty, she pulled it back and shook it to see what was in it, just like our Sammy! She's not allowed to drink & eat freely yet, but they might give her a little drink tomorrow. She sucks on lollipops and her mouth sponge (hospital toothbrush), though. She has held on to the sippy cup all day. I hope we can put something in it soon!

She played a lot in OT, too, and is following instructions really well;
she opens her mouth, holds things in both hands, hands you something when you ask, waves bye and gives high fives. She was also making faces at me earlier, spitting out her tongue and just being playful in general. She raises her arms for us to pick her up all the time now, and it's so nice to be able to do that.

Both procedures went fine; the old central line is out, which is a good thing, as it was growing pseudomonas. She's on a couple antibiotics in the meantime. She has a new line in her arm, and a separate dialysis line in her belly.

She also had a special visit from one of her ICU docs, Leslie,
who's been involved w/Sam's care since day one.
Tomorrow she has each of her therapies once, then she has a day off Sunday, then back to her regular twice a day (each therapy) on Monday. She'll probably need lots of rest this weekend to recover from the busy week!

Thanks,
Jessica

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W:cool:W!
Seems like Friday was a *nice* finish to a Great Week!

GO, Sammy!!

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Samantha, you are still in my prayers.

The last update sounds great! Still praying...

Great update! :D Hopefully, next time, your sippy cup will be full!!! Prayers and hugs for you, sweet child!

Big smile here. So good to hear of Sammy's progress. :)

So glad to hear Sammy is doing so well!!!

:(

Monday, July 18, 2005 at 12:14 PM EDT

Sam did okay for the most part over the weekend,
but still had some vomiting, and spiked a fever this morning, and
has been sluggish since then.

She enjoyed some family visits, and played a bit,
but unfortunately, they don't think she's well enough for rehab yet,
and she will be transferring to the dialysis floor (3) today,
as she's not sick enough for ICU, but just not ready for rehab.

Besides the vomiting and fevers, her heart rate is up significantly and her bp is lower than usual. Another issue is insurance; ours covers 60 days of inpatient rehab, but if she's not being rehabbed while on the floor (i.e., she's too sick for any therapies today), we "lose" those days.

They'd rather her return to a medical floor, and then come back to rehab when she can take full advantage of it. She will be under the primary care of a nephrologist, and will receive more medical attention than they can offer on rehab.

So... a major, but necessary, step back.
Please send Sam some prayers, as she's having a rough time.

Thanks,
Jessica

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Prayers Offered that the upset tummy gets better!

GO Sammy! ~
We'll stick with you, no matter What Floor you're on! ;)

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It stinks that Sammy is taking a step backward, but I do think that the doctors on the dyalisis floor will take very good care of her! Keep trucking Sammy!! We are all praying and hoping for you!

Sammy continues to be in my prayers! I hope this rough spot passes quickly.

Prayers on the way from California - from Zip - Kel- and I

Sammy, come on little one............you can do it...............a bit of a setback - now take the next giant leap forward...........we are all praying so hard for you.

I'm so sorry to hear that Sammy is having another setback.:( Lots of prayers and positive thoughts are being sent her way.

Prayers for little Sammi's family...it must get discouraging, but your courage and strength shine through!

Bless her heart..........praying for good things for all of you.

Logan

:( Prayers from Montana and {{hugs}}

Sweet Sammy, :( I continue to pray for you. Hang in there. You've come a long way, and I know God will help you as your health returns to normal. Stay strong little one!!! {{{hugs}}}

I am so sorry for you- but we knew always it could happen on her long way to recovery. All the best thoughts to you:)

;)

Tuesday, July 19, 2005 at 04:43 PM EDT

Well, as always, wait a little while and the plan will change.
We are still on the rehab floor, but not technically on rehab's "service",
which means Sam's only having therapies once a day (like during the latter part of her ICU stay), and under the primary care of a nephrologist instead of her rehab doc.

It looks like she has a UTI, which they are treating, and is not much of a surprise, considering she had a catheter for quite some time. The nephrologist thinks she can stay put -- sparing her another move, esp. a short-term one -- and they'll watch her for a few days, and then (hopefully!) be able to return her to rehab's service.

Sam had a pretty good day today, and
is officially allowed to drink from her sippy cup. :cool:
Of course, once actual liquid was put in the cup, she decided she didn't want a drink after all! That all changed when Daddy showed up, and pretended to drink from her cup, then handed it to her --
she took her first sip! :) :D
(Apparently, Mommy wasn't nearly as impressive when she tried the same stunt earlier.)

She's smiling a lot more now;
I put her sunglasses on her stuffed rhino, and that caused quite a grin.

She wasn't as sleepy today as the last few days, and we're looking for her to continue to perk up, once the infection is brought under control.
Her ICU nurse, Katie, came by to see her yesterday;
as nice as it was to see her,
we are relieved that we're not heading back there!

Sam appreciates your prayers, and she's working hard to get better.

Thanks,
Jessica

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Sammy ~

Thanks for Workin So Hard to get Better ~
We'll Keep On Prayin!

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:D glad to see Sammy had a better day today!

New update from the CarePages

67 July 21, 2005 at 10:43 AM EDT
And the plan changes yet again...we came back to the ICU late yesterday afternoon. Sam's bps were low, due to infection, and one of her ICU docs came down to take a look, and it was decided that Sam could use a closer watch until the infection was under control, and that the appropriate place right now was ICU. If all goes well--she started a new antibiotic yesterday, as the bacteria causing the UTI is resistant to the other one they tried--we will only stay 3-4 days. Her bp is fine again, and after sleeping all day yesterday, Sam was quite perky in the early evening, and played with Aunt Johanna, Mommy and Daddy. She sat up for a couple hours, danced to the Wiggles, and gave us lots of smiles. The vomiting is still an issue, and they will be checking into that again. Some good news, though, is that she hasn't had dialysis in a week, and her numbers still look good enough. We just need to clear this UTI, and get back to rehabbing. Send some good thoughts Sam's way; this is just another setback, but we'll move forward again!
Thanks,
Jessica
******

Good news on the dialysis front, that's fabulous. Sorry about the slight set-back and infection, but we hope things continue to improve for *our* Sammy! (She does know she now has hundreds of aunties and uncles and grammas, right? ;) )

Oh Sammy, am I allowed to make a bad joke and tell you that we all know the UTIs from our kitties;)

So you will have to take the antibiotics (and I hope they have the right one now) until you are finished.

But it is true that life begins to be a little more fun- like dancing and drinking out of the sippy cup and not having had dialysis in one week (which is simply great:D :D :D ).

So things WILL look up:)

We're still pulling for you, Sammy!

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!

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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Fantastic news.

Thanks for keeping us posted Phred!

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:)

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

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

Quote:

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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

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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!

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

*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!

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!

:)

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. :D
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!

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:)

:)

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!

:)

;)

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

http://www.carepages.com/usr/G26254/P192605_FS.jpg

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

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Daddy and Me ...

http://www.carepages.com/usr/G26254/P192606_FS.jpg

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Nappie-Time on Daddy!

http://www.carepages.com/usr/G26254/P192607_FS.jpg

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Mommy has a good lap, too!!

http://www.carepages.com/usr/G26254/P192608_FS.jpg

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Photo Credits to Auntie Johanna -
Thanks, Joh!!

;)

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.