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#263527 - 02/27/05 08:24 PM Re: Update
Anonymous
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Sunday, February 27, 2005 2:00 PM CST

Oh what a wonderful day!!!

Dr. Superina (her surgeon that I swear walks on water) came by today on the morning rounds. They have decided to agressively wean Miss Natalie OFF of the vent. They have slowly begun the process today and plan on pulling it out tomorrow. (We hope she agrees with this.) Yesterday they started feeding her again, but just with pedialight. Dr. Superina said that he thinks she can handle regular food. So they have started giving her Isomil though her NG tube. But again, very slowly, only 5 ml an hour, then moving up 5 ml every 3 hours if she tolerates it well.

She SAT UP TODAY!!! Daddy and I helped her. We placed blankets next to her - to help prop her up - she's so weak. But she had a wonderful time playing with her see-n-say and sitting there for a little while!!!

Thanks all for your words of encouragement. We're praying for more good days to come!

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#263528 - 02/27/05 08:25 PM Re: Update
QCL Offline

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QCL
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NW IL
Oh crap...that was me with the update.

BTW - right now her and Daddy are watching the Nextel Cup race. It's too cute - looking at them both sitting there staring up at the TV. What a pair they make.
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#263529 - 02/27/05 08:59 PM Re: Update
Kathleen O. Blanchard Offline

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Wonderful news! Hang in there.
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#263530 - 02/27/05 09:32 PM Re: Update
HRH Dawnie Offline
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HRH Dawnie
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Anchorage Alaska
LOL Becca we sort of guessed that was you! Thanks SO MUCH for sharing that great news with us. I needed that smile today
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#263531 - 02/27/05 11:06 PM Re: Update
corkygirl Offline
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middle of the country
What good news, isn't it amazing how much those little things can mean to us!!! Thanks for keeping us all up todate and be careful in the snow tonight.
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#263532 - 02/28/05 12:09 AM Re: Update
Truffle Royale Offline

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Ditto the thanks for taking time on a gloomy Sunday to give us reason to say a thank you prayer and smile.

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#263533 - 02/28/05 03:17 AM Re: Update
Pup Offline
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Brought a tear, Becca. Thanks and keep it up!!

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#263534 - 02/28/05 06:00 AM Re: Update
Citrus Offline
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It's fantastic info!
(I'm doing the same thing that corkygirl's avatar is doing just above my post! )

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#263535 - 02/28/05 12:12 PM Re: Update
Skittles Offline
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TN
Thanks for keeping us posted with the excellent news.
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#263536 - 02/28/05 01:33 PM Re: Update
RUNSWITHSCISSORS Offline
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RUNSWITHSCISSORS
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It is so good to hear of your progress. Keep it up! You all are still in our prayers.

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#263537 - 02/28/05 02:25 PM Re: Update
Okie Dokie Offline
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Okie Dokie
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Wonderful news!!!! We will keep you and your Bear in our prayers.
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#263538 - 02/28/05 04:19 PM Re: Update
deppfan Offline
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All over the map.
That is so wonderful! I'm so glad that things are going so well. She is blessed to have parents who are so strong! Hang in there Becca and tell Jason we are all pulling for you guys.
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#263539 - 02/28/05 05:55 PM Re: Update - Rejection?
QCL Offline

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Monday, February 28, 2005 11:35 AM CST

Grrr...As with all things, what goes up must come down and such is the roller coaster of our lives.

The doctors are still planning on pulling the vent today. So that's a good thing. Natalie's LFTs (Liver Function Tests) rose over the weekend - that's not a good thing. She has an ultrasound scheduled for later today. The doctors are thinking that this could be a mild case of rejection.

The "R" word. No parent of a transplant kid wants to hear it. But they have told us that it can be easily controlled with a few days of steroids.

After the ultrasound, we'll know more. They may do a biopsy tomorrow.
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#263540 - 02/28/05 05:57 PM Re: Update - Rejection?
DeeQ Offline
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Turnpike Exit 10
My Dad (kidneys), has had mild rejections in the past. The steroids always worked. She will be OK.
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#263541 - 02/28/05 06:46 PM Re: Update - Rejection?
Princess Leia Offline
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Alderaan
Becca, I just saw the update on her website. Grrr is right. Prayers still coming.
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#263542 - 02/28/05 07:37 PM Re: Update - Rejection?
RVFlyboy Offline
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Soaring over Georgia
Having been on the roller coaster too for some time now, I can certainly relate. Hang in there, Becca. Better days are to come. I am really praying that they will be able to control any rejection and that Natalie will continue to improve. I also pray for energy, peace, and strength for you and your husband. I do pray that your recovery is going well still.
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#263543 - 02/28/05 11:41 PM Re: Update - Rejection?
Bones Offline
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Land of Enchantment
I am praying that all goes well. Stay stong!
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#263544 - 03/01/05 02:03 AM Re: Update - Rejection?
CRAatBOK Offline

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Further South than I wanna be.
Becca, Hope you were able to get a picture of them together. Sorry about the small set back but it sounds like the progress is outweighing it. Keep on smiling.
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#263545 - 03/01/05 09:42 PM Better News for Natalie
Princess Leia Offline
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Alderaan
This is from her website today:

This morning they decided to repeat the ultrasound from yesterday. Something looked funny and after a second look, it was determined that all was fine.

Her liver numbers went down. Most likely this is explained by her having a mild case of rejection followed with the steroids the gave her prior to pulling the vent. It is believed that the steriods helped to get the rejection under control. At least that is the theory for now.

We'll continue to monitor her LFTs.

She just drank 8oz of apple juice and happily played with her new Fisher Price Castle this morning!!!
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#263546 - 03/01/05 09:46 PM Re: Better News for Natalie
deppfan Offline
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All over the map.
SWEET!
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#263547 - 03/01/05 09:47 PM Re: Better News for Natalie
Beagles22 Offline
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State of confusion
That is wonderful news! I am glad to hear she is feeling better and that maybe our prayers have helped!
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#263548 - 03/01/05 10:41 PM Re: Better News for Natalie
Nanwa Offline
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Nanwa
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Clintonville, WI, USA
I am praying that things continue in such a positive way!
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#263549 - 03/01/05 10:49 PM Re: Better News for Natalie
corkygirl Offline
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Posts: 4,241
middle of the country
"just drank 8oz of apple juice and happily played with her new Fisher Price Castle this morning!!!"

That sounds nice and it's amasing how these small steps seem like giant ones!!! Continued prayers and good thoughts. (And I was a day off on the snow )
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#263550 - 03/02/05 01:12 PM Re: Better News for Natalie
DeeQ Offline
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Turnpike Exit 10
Great news, I just knew those steroids would help!!!
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#263551 - 03/02/05 06:51 PM Re: Better News for Natalie
QCL Offline

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NW IL
Right now Natalie is running a fever of 102. But her LFTs continue to improve. She is also starting to get puffy as a side affect of the steroids.

For breakfast she ate 1/2 of a breakfast sausage - we're taking baby steps on the food thing.

Today's plan of action looks like this:
-Do cultures of blood to look for a bacterial infection (she's been on anti-viral meds up to now)
-Pull her subclavian line since it's been in for 21 days
-SEND US TO 6 WEST!!!

That's right, we're getting out of the ICU!!! WOOHOO!

I'll make changes to the page once I know the room number. Hopefully the move will be today...
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