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

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

-----------------------------------------------------------

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

GO, Sammy!!

-------------------------------------------------------------------

:( 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

-------------------------------------------------------------

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

-----------------------------------------------------------------