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

:)

July 05, 2005 at 09:20 AM EDT

Sam had a pretty good weekend, all in all; she slept a lot!
She spiked a fever one night, but was able to bring it down by herself, w/no meds. She doesn't have pancreatitis, which is good news; they readjusted her feeding tube, and the vomiting seems to be under control.

She had dialysis yesterday (we are still waiting on results from the 24-hour collection), and her pain meds are now intermittent instead of constant; the weaning process will take several weeks.

We gave her some apple sauce over the weekend, and
she managed a few bites, but kept trying to feed me instead,
and when Daddy pretended to eat the rest, she actually laughed!

She looks great, and we are anxious to hear about rehab;
the team is making rounds now, and
I will post again later if there's any news.

Thanks,
Jessica

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*Laughing* is Good! ;)

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Sammy is *so* cute :D

I'm glad shes doing better!!

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posted by jessica

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..and when Daddy pretended to eat the rest, she actually laughed!

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awe, that's really good thing to hear. :) laughs product good cells! ;)

keep going, little sammy, I know you can do it. take care, everyone.

Happy Fourth of July Sammy!!

I'm glad to see she is improving, lately there has been much good news!

My thoughts are always with this couragous little girl and her entire family!

I have just finished reading all of the patient updates. What a story. Oh my gosh.

I will never complain about anything, ever again. This family has gone through so much. I will never forget this family and their precious child Samantha.

It will take me weeks to comprehend what is going on with Samantha. What a sweet, innocent child. Oh my.

This truly puts things in perspective.

:)

Wednesday, July 06, 2005 at 11:05 AM EDT

Well, it looks like Sam is heading to rehab tomorrow;
the rehab folks came by this a.m. to give me the news.
This is such a big step for her. I've been told they work miracles in rehab, and that the staff is excellent. Send extra strength Sam's way to help her work hard so she can come home!

In other news, the GI docs seemed to think the vomiting was due to one of her tubes dipping down into the wrong area;
that has been remedied.

Her catheter has been removed, and
she's now going in her diapers again, like a regular toddler.
She's having dialysis right now, and it looks like they have a M-W-F schedule in mind; I haven't heard any news about the collection they tested, to see how well she's "clearing."

They also removed her central line, as she has less meds coming in now,
and they don't need as many ports.

So it looks like a big week for Sam!
She's been very alert this morning, and was getting very excited,
waving her arm around and blowing me kiss after kiss;
maybe she heard that she's getting out of ICU!

I'll miss the wonderful ICU people who have given her
such excellent care thus far,
but I've promised to bring Sam back for visits --
they threatened to track us down if I didn't!

Thanks,
Jessica

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Oh ~ W:DW!! :) :)

ReHab, Here We Come!!

ReHabbers note: Prepare to have your Hearts STOLEN!!

ICUers note:
Many, MANY *THANKS* to you Guys & Gals for
all you've done for Sammy!! ;)

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I'm just thrilled to hear this news. Sammy's leaving the PICU! Yay!!! Another big step in the positive direction. :D

Things are getting better and better for baby Sammy!!! :D My prayers are still with her!

Thats great!!! Stay strong Sammy!!

It's so great to continue hearing positive news! Samantha is still in my prayers.

This is wonderful news!!!:D I'm so thrilled for Sammy and her family and hope she continues to improve more each day.:D

Sweet, beautiful Sammy, those are such great news!
Many gentle hugs going your way with best wishes for the recovery to continue so you can go home soon.

This good news just warms my heart. I can imagine how it must make you and your family feel.

What a precious little girl.

VERY good news. Sammy- life is getting a little more normal again:)

I'll blow kisses your way, Sammy! Onward to Rehab, a new group of people to charm! :) Keep getting better and better, Sammy!

From the CarePages, today at 12:06:

Of course, like the weather in Cincinnati, the plans for Sam change by the hour, too. Shortly after I posted yesterday, I learned that since they can't do dialysis on the floor in rehab, they were having difficulties scheduling Sam once she transferred: the dialysis unit has a tricky schedule, and the nurses there don't deal with trachs a lot; the other choice was to bring her back to ICU for dialysis, but that's a major headache in terms of expense for room turnover and things of that nature. (Not to mention that once Sam vacates a room, everything has to be scrubbed down/sterilized/burned/thrown away due to the infection in her stool.)Anyway...the new plan was to move her tomorrow, right after dialysis; that way, the kidney docs get a last dialysis in before the transfer--they want to then try to let her go a week w/out dialysis, and see how she does. That would all have been swell, except that her admitting rehab doc won't be in tomorrow, and--just to add another twist to the saga--she's vomiting again (puked so hard her feeding tube fell out), so now they've scheduled an upper GI for this afternoon, so they can make sure there's nothing anatomical causing this. Of course, it's better to tie up all these loose ends before the transfer, and we want a resolution as far as the vomiting. Everyone agrees she belongs in rehab, though, so it's just these few last-minute snags...arrgh...but the plan, at this minute, is to transfer her Monday morning, 9 weeks after her admission to the hospital. Other than that, she ran a fever last night, but brought it down on her own again, w/no meds. She had a nice bath this morning, and we gave her a much-needed shampoo, and then I made my best effort at braiding her hair, so she now looks like a little Swiss Miss. She's also getting quite good at brushing her teeth by herself, and really enjoys it when I "dance" w/her by moving her arms around--she was all smiles for that. Send some prayers her way for a quick fix for the GI problem, and a calm weekend in the ICU before she begins the next chapter. I'll try to post again later if I get any news today.
Thanks,
Jessica

*****

Still in our prayers, we're so glad you're getting more and more time off from dialysis, and hope that the tests show your kidneys are working as they should!

Oh, Mommy Jess, we need Swiss Miss Sammy pictures!!!!! :)

Oh how difficult that must be- one one hand Sammy being healthier and wanting to be more active, on the other hand all these "loose ends". And of course it's better safe than sorry.

So a little more patience is required (something I never have :()

Little Sammy, you are still in my prayers. {{{hugs}}}

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Originally posted by sasvermont
I have just finished reading all of the patient updates. What a story. Oh my gosh.

I will never complain about anything, ever again. This family has gone through so much. I will never forget this family and their precious child Samantha.

It will take me weeks to comprehend what is going on with Samantha. What a sweet, innocent child. Oh my.

This truly puts things in perspective.

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Gosh, for me too! :( Bless her little heart! Loads of healing prayers and thoughts are on the way to dear Samantha. I can't even imagine...:(

**hugs**

Sammy and her family are constantly in my prayers.

Friday, July 08, 2005 at 09:57 AM EDT

The good news is that the upper GI showed nothing;
the bad news is that she's still vomiting.

They're not sure what's causing it --
maybe the meds, maybe some reflux...who knows.

I just hope they can get it under control soon, and
that this won't change her transfer plans.

She'll have dialysis this afternoon, and
then no major plans until Monday.

I'll post again Monday, hopefully after we relocate!

Thanks,
Jessica

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Prayers Offered for an end to the Upset Tummy ...
AND a successful *Transfer* to ReHab.

GO, Sammy!!

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:( More prayers on the way. {{{hugs}}}

Today's update:

July 11, 2005 at 01:43 PM EDT
Well, we're still in ICU, but the latest word is that we'll move to rehab tomorrow. Sam continued to vomit over the weekend, but she's not vomiting food--only bile/secretions. She mainly vomits when coughing or having her trach suctioned; they think it's just due to a very sensitive gag reflex. They gave her a slightly different trach tube to see if that would help. They're also considering feeding her through a tube in the stomach, so she won't gag on the tube up her nose--now that she's more alert, she's trying to pull on it, and she's also moving around so much that her central line keeps coming out a little, so they will probably remove that as well, and do dialysis, when needed, through a belly catheter, if the plastics doc says the skin is healed enough. They thought the central line was infected (just the skin), but it appears that her frequent vomiting just made the area messy, and it's probably fine. One idea being tossed around is removing the trach in the near future, as the reasons for traching her no longer exist: she has no surgeries/procedures planned anytime soon, and she's off the vent. We're all for that, as she could talk again, and eating would be easier, so maybe that can happen once she's in rehab. She had dialysis today, as some of her numbers were elevated, but they may wait a while before doing it again; some tests are being done to see how much her kidneys are clearing, but no results are back yet. She starts a new formula today as well, w/less protein--a more "kidney-friendly" type, so her kidneys don't have to work as hard. They've taken away her special air mattress, and she now just has a regular big-girl bed, as her skin is no longer as vulnerable. (One of those metal crib-baby jail beds is sitting outside her room; I don't know if they're planning on using it or not.) She sat with both mom & dad over the weekend, and just a little while ago, she was sitting in her bouncy seat on the floor, playing w/mom, until she fell asleep. I also got a big smile from her earlier today, which always makes my day. Soooo....that's where we are at the moment. Plans are subject to change any minute, though, but we'll still cross our fingers for tomorrow.
Thanks,
Jessica
PS A big Happy 10th Birthday to my nephew Bud (aka Jordan)

Oh Sammy, we hope so much you can go to rehab soon and get rid of that trach. Only a little patience, sweetie. We still keep our fingers and paws crossed.

Still praying for you, Little Sammy!

{{{Hugs}}}

You are still in my prayers, Sammy. {{{{hugs}}}} Stay strong!

July 12, 2005 at 11:17 AM EDT
The plan is still to move us to rehab today--probably early this afternoon. Sam was very active this morning, and enjoyed a cherry lollipop during therapy today. She's also had OT & PT, and is pretty wiped out. She seems to be vomiting less. She can now roll over completely, so we really have to watch her in the bed! I'm amazed at her strength, considering how long she's been in bed and how much medication she's still on. In a few weeks, she should be off her meds, and getting into all kinds of trouble. I'll try to post again after our move.
Thanks,
Jessica

Yippee!!! Good luck Little Sammy!

Keep on truckin' Sammy!! :D So far, it seems like things are looking up!

It was a close call this morning (Wednesday), and Sam nearly was returned to the PICU. She had an awful night of vomiting and fever, and my sister said she looked awful this am. My sister was pretty discouraged about the change in Sam.

I talked to her several hours later and the attending said Sam could stay in rehab as long as she didn't get worse, and they would 'assign' a nurse to her for more frequent checks.

I just called the room, and no one answered. That doesn't necessarilyl mean something bad, but, it always makes me uneasy.

:(

I'm thinking of all of you.....I'm sorry that there has to be such hardship in people's lives sometimes.

I surely hope she gets back on the good side of this problem. I wonder why some people have to struggle so with life and others float by. Doesn't quite seem fair, does it.

One would think that this little girl and her family have been through enough now and that the tide should turn.

I think about Sammy so much these days. It took me months to notice this thread. Such a heavy duty thread.

Bless your sweet soul Sammy.

Sammy and your family are still in my prayers (((hugs)))

Dear Johanna,

I'm so sorry to hear Sammy had a bad night. :( Poor baby! Sending prayers that everything turns out well, and that she feels better soon.

{{{hugs}}} to you and your family. I can't imagine how difficult this time is for you. :(

.
Wednesday, July 13, 2005 at 04:32 PM EDT

Well, we're trying to get settled in rehab;
the staff is very nice, as is the room.

Sam had a rough night--vomiting and fever.
She looked pretty bad this morning, and I was sure we were heading back to ICU, but her rehab doc said the first night is often rough, and that they can handle these things in rehab. They'll run more tests re: the vomiting, but those usually turn up nothing, so I don't know how that will resolve. She has some diarrhea again, too ... not a fun time for Sam.

She's basically been sleeping all day;
she managed some PT early this a.m., but that's it.
She's in the dialysis clinic right now, about halfway through her treatment, then she'll go back to rehab. Her kidneys are clearing some, but not enough yet to stop dialysis.

Seeing her sick again is discouraging, but these setbacks are expected along the way. We will have a meeting Monday afternoon w/the rehab team to discuss Sam's plan, daily schedule, expected inpatient stay, goals, etc.

One thing Sam did do today was put her right index finger up on her mouth; some of you know that Sam's finger was in her mouth whenever she was upset, stressed or tired, and she sucked on it all night in her sleep -- I guess that old habit is kicking back in now that she's becoming more alert. I'm glad to see her trying to comfort herself in her usual way.

Send some extra prayers Sam's way to help her get through this transition.

Thanks,
Jessica

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Prayers Sent -
Hopefully Sammy will "settle in" to the New Room and Activities.

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*deep sigh*

We just cannot imagine what you are going through, Sam, Jessica and family.

Being here and trying to reach over a virtual hand already goes so deep.

I know about these setbacks in any process- so I'll never think it's over till' it's over.

Being in rehab is a step - yet another - in the right direction, and even though the transition wasn't as smooth as you might have hoped, at least they sound like good people and knowledgable as well.

Hugs to you and to Sammy, too!

Sammy, many good thoughts and prayers continue to go to you, sweet little girl. Also to your mommy and daddy.

Even with the fun of a BBQ going on, Sammy, we will not forget you even for a minute.

My heartfelt prayers are going out to you sweet little girl, and to your Mom and Dad.

Lots and lots of prayers going out for little Samantha, poor baby. :( And for her loving family as well.