Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Pre-Trip Reports and Plans
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS Updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read


Reply
 
Thread Tools Rate Thread
Old 02-27-2009, 02:48 PM   #751
jenb1023
DIS Veteran
 
jenb1023's Avatar
 
Join Date: Jun 2007
Location: Central PA
Posts: 2,508

Hi Mandy! Thanks for the update!

I am so glad to hear that she is speaking and that speech therapy is going well!

I hope she gets some relief for her poor bottom soon.

I am sad to hear that the clot will be around for awhile but glad to hear they are being cautious.

So sweet of her to want to hold your hand.

I wish there was more we could do for you all but I am guessing you are probably a 7 hour drive from here so thoughts, prayers and packages will have to be enough.

Take care! Jen
__________________
Me (Jen) DH DD 11 Mickey


Apr 22-28, 2007 - WL, Jan 26-Feb 2, 2008 - AKL, Nov 15-23, 2008 - Pop,

Oct 30-Nov 3, 2009 Pop - me and DD, May 15-17, 21-23, 2010 - Universal/Poly
Jan 22-30, 2011 - POFQ, May 10-13, 2012 DCL on the Dream Sept 7-11, 2012 DD's surprise bday trip - BC Aug 30-Sept 2, 2013 - AOA, May 23-27, 2014 - 24 Hour Event - WL, June 29 - July 2, 2014 - POP, Upcoming - Nov 29 - Dec 6, 2014 - BC/ASSp - 1st Xmas Trip
jenb1023 is offline   Reply With Quote
Old 02-27-2009, 05:18 PM   #752
eyor44
DIS Veteran
 
Join Date: May 2008
Location: Mississippi
Posts: 5,228

Hello Mandy! wonderful to hear from you. Sounds like they have a plan about the clot. Yay!
WooHoo on the talking!
WooHoo on the new bed!
WooHoo on the brain drain cap!

Now if we could just get you some Bourdeaux's Butt Paste, we might could get her to feeling a bit better. But I'm not certain it would be good on open sores. I'll check next time I am at the store.
eyor44 is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 02-27-2009, 08:22 PM   #753
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

Lauren's doctor finally prescribed her XENADERM ointment. It helps prevent pressure sores. If she gets a red spot, we can put that on there and gets better very fast.

The medicine is designed to attract blood to the area and keeps it "hydrated"...at least that is how her PT explained it to us. If we use it...she does fine. If we forget it on a trip or something...we pay for it. (Actually Lauren pays for it! But we have to hear about it! )

Anyway...maybe that would be an option for Becca. It is a bum saver for Lauren!
maroo is offline   Reply With Quote
Old 02-27-2009, 08:46 PM   #754
jessica52877
DIS Veteran
 
Join Date: Feb 2004
Posts: 6,496

I just wanted to say that I am still following along and praying for your family and Becca everyday! There is not a day that goes by that I don't think of that smiling face!
__________________

Ebay ID - Jessica52877
jessica52877 is offline   Reply With Quote
Old 02-27-2009, 09:05 PM   #755
nikkers
Mouseketeer
 
nikkers's Avatar
 
Join Date: Mar 2008
Posts: 291

Quote:
Originally Posted by SunnieRN View Post
More prayers from Texas!!
Have you heard of butt paste? It is actually for diaper rash but may help Becca heal. Also if they use a doughnut under her when they try to sit her up it will keep pressure off her bum!!
Great suggestion. I love Butt Paste. There is also a perscription butt paste. Just a little stronger. When DS was little his butt was very sensitive. It would get so red, and almost blister like a sun burn. The perscription butt paste was amazing. We also used the over the counter Butt Paste.
__________________
NIKKERS

Tips from out first family vacation -
http://www.disboards.com/showthread....1#post30205871

nikkers is offline   Reply With Quote
Old 02-27-2009, 09:33 PM   #756
Khalana
Mouseketeer
 
Khalana's Avatar
 
Join Date: Sep 2008
Posts: 399

Still praying here too! I'm so happy to hear that she seems to be more like herself and that the brain drain is done!
__________________
Linda, mom to Lydia (05) and Tobias (07)

A link to my TR: http://www.disboards.com/showthread....0#post27875290
Khalana is offline   Reply With Quote
Old 02-28-2009, 12:41 AM   #757
SunnieRN
DIS Veteran
 
Join Date: Aug 2005
Location: Texas, USA
Posts: 2,998

Quote:
Originally Posted by nikkers View Post
Great suggestion. I love Butt Paste. There is also a perscription butt paste. Just a little stronger. When DS was little his butt was very sensitive. It would get so red, and almost blister like a sun burn. The perscription butt paste was amazing. We also used the over the counter Butt Paste.
Poor baby!! My first grandson had the prescription kind also! Great stuff!!
__________________

Thanks eandesmom!!!
SunnieRN is offline   Reply With Quote
Old 02-28-2009, 01:33 AM   #758
Tink rules
The kids in my family sometimes think I walk on water... the rest of the time they know I'm their nutty AUNT!!!
 
Tink rules's Avatar
 
Join Date: Dec 2006
Location: Upstate NY
Posts: 18,100

Quote:
Originally Posted by llurgy View Post
Hi all of you wonderful people out there

Yup yesterday was a long, long day, we were fried when we went back to the Mac house at around midnight.....18 hour day with all that going off, plus Bic and her really sore bottom having to be changed about five or thirty times an hour.....phew!!

Today after having a drug induced Ativan sleep overnight she was bright eyed and bushy tailed David didn't go in to work yesterday or today, so this morning he came across to the hospital at six-ish and I had a lie in until nine, David has now gone back to the Mac house for a little afternoon siesta in exchange for my lie in this morning

We still have the sore bottom going on, the sores on her bum cheeks seem to be holding steady but now she has developed really bad open sores around her anus which are really painful to her.

She is sleeping at the moment, I am typing one handed because she wont let my other hand go, bless her little cotton socks

She was happy this am after her nights sleep, very talkative and now starting to use her near normal voice instead of a whining voice.
She had speech therapy this morning and did really well. Her pastor was visiting her when the therapist came and Becca introduced them to each other

The heparin for the clot......the clot is quite large, they are saying that it may take a month to three months to totally disappear. The dose of Heparin they are giving is only really enough (therapeutic dose) to stop it from getting any bigger, they are hoping that the actually body "clot fighting cells" will do the job of breaking down the clot.
We do not know whether we will be keeping the PICC in the long term or not. As it stands at the moment every doctor Neuro surgery is asking is telling them that they advise against pulling the PICC for fear of dislodging the clot. Seeing as the clot is going to be under long term management and the Heparin is being administered long term through the PICC the question is a Moot one at this point.
The reason they didn't "focally" use a clot buster on the clot is because it would need a far higher mega dose of Heparin than they are willing to risk.
As it is, the heparin is a really low dose that she is getting now and they are still counteracting it with some clotting transfusions.

She now has an air bed We really only wanted a Donut for her to sit her bottom on but we somehow finished up with an air bed. Apparently they dont have donuts at this hospital.
She wasn't taking any advantage of the sports bed she was given so the air bed is getting a try out.
The air bed is neat though, it goes through these cycles where it pumps up little pillows in rotation so the body doesn't develop pressure sores. Shame that it doesn't come with a built in donut
We have had no complaints from Bic about the new bed so that is good.

The brain drain has been capped!!!! The rush CT she had last night came back showing that the ventricles had stayed a regular size with no swelling so it has been turned off. The plan is for her to have a CT on Sunday or Monday (who are we kidding, Sunday??We are on hospital time after all).
If the CT comes back good, they may or may not wait a couple of days and do another CT or they may just pull the drain at that point. Yay, no more brain drain please!!

Thats it for now, she is still sleepin' and hand holding, I am still sat here one hand typing with an aching back

Will speak again soon,
Love Mandy
Glad she is coming along!!! Hopefully she can get some relief from the sores... I know that cortizone will help the sores around the anus, see if they can try that - they have a prescription strength that will help.

Good to know she's talking and all...

Good Luck!!!
__________________
'Tis the gift to be simple, 'tis the gift to be free,'tis the gift to come down where you ought to be, And when we find ourselves in the place just right, t'will be in the valley of love and delight.

MichelleAll it takes is faith, trust and a little bit of PIXIE DUST!!! Dream of Small worlds and large Mice!Ohana means family, family means nobody gets left behind. Or forgotten. This is my family. I found it, all on my own. Is little, and broken, but still good. Yeah, still good.
Be the kind of woman that when your feet hit the floor each morning the devil says "Oh Crap, she's up!"
1972 - 1986.... Various times while visiting Gram and Gramps!!! 1986 - Off Site Sheraton 192...With Beverly 1987 - Same but this time with Mom 1994 - Poly with Em 1996 - Disney Institute & Poly & Grand Floridian w/Mom 2000 - Grand Floridian w/M 2005 - AS Music & Grand Floridian w/Mom The GRAND Tour!!! Panama Canal WB Repo Cruise 5/2008
Tink rules is offline   Reply With Quote
Old 02-28-2009, 09:59 AM   #759
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

We are still praying for Becca!

Sounds like she has had a good morning so far. I am praying for the brain drain procedure! I hope she gets it out very soon!

Becca looks so good sitting up!!
maroo is offline   Reply With Quote
Old 02-28-2009, 11:10 AM   #760
llurgy
DIS Veteran
 
llurgy's Avatar
 
Join Date: Oct 2008
Location: Bysville, Ohio
Posts: 585

Hi all,
Just to put everyones mind at rest about the butt care

We are using a combination method at the moment for the two different kinds of bottom problems.

For the ongoing diaper rash - which is slowly getting better:

Four times a day she has some compresses placed with some mild acetic on them.
Also four times a day she has Nystatin powder dusted on the rash and covered with petrolatum based Maalox. The changes inbetween are just reated with Maalox.
The Anal area has a different procedure:
After wiping her butt clean with dry wipes that are wetted down with water she is sprayed in that area with Carraklenz, a dermal wound cleaner. Then Stomahesive powder is puff/sprayed there and finally on to of that is Proshield plus, a skin protection Gel.

So, her bum finishes up needing a person with a degree to change just a diaper

All the time we are doing this she is telling us to hurry. If we say we are hurrying, she says hurry faster
__________________
Becca's Make-A-Wish report

www.schtabs.com

Becca's MAW/GKTW/Disney Trip was January 21st to January 27th 2009
Me ...... David ...... Becca
llurgy is offline   Reply With Quote
Old 02-28-2009, 11:19 AM   #761
Shanka
Earning My Ears
 
Shanka's Avatar
 
Join Date: Dec 2008
Posts: 37

Ah poor sweet Becca. God bless that sweetie.
__________________
Samantha
Proud mama to Corey (14), Asia(11-wish child), Raven (8), Raina (6), Sienna (3) and River ^..^ (Asia's seizure alert dog)

Asia enjoying the dolphins at Sea World
Wish Trip Updates are on my Blog
http://hickorywoodhomeschool.blogspot.com/
Shanka is offline   Reply With Quote
Old 02-28-2009, 11:31 AM   #762
mom2lilnick
Mouseketeer
 
mom2lilnick's Avatar
 
Join Date: Aug 2008
Location: Nebraska
Posts: 483

I am so thankful that things are getting better. Praying for you guys always.
__________________
Amy..

Wife to one amazing guy Jeff
Mom to three wonderful kids..
Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
mom2lilnick is offline   Reply With Quote
Old 02-28-2009, 12:15 PM   #763
maroo
DIS Veteran
 
maroo's Avatar
 
Join Date: Aug 2008
Location: MS
Posts: 8,042

Wow!! It sounds like you do need a degree to help get her freshened up!!! Whoa!

I hope all of that helps...sounds like it should!

And glad she is back to her old self some! "I am the boss of mum and dad" is hilarious! She gets it, doesn't she!
maroo is offline   Reply With Quote
Old 02-28-2009, 09:26 PM   #764
eyor44
DIS Veteran
 
Join Date: May 2008
Location: Mississippi
Posts: 5,228

okay, so I won't send the Boudereaux's
eyor44 is offline   Reply With Quote
Old 03-01-2009, 07:18 PM   #765
3princesses+aprince
DIS Veteran
 
3princesses+aprince's Avatar
 
Join Date: Feb 2006
Posts: 3,879

So glad to hear things are going well, except for the sore bottom The air bed sounds nice!!! Glad to hear that she's talking alot.
__________________
Pam
Emily(13) Lizzie(11)
Samantha(8)


Our very magical, very first trip to Disney World!!
http://www.disboards.com/showthread.php?t=2182745

Come check out my Pre Trip Report, May 09
http://www.disboards.com/showthread.php?t=2066680
3princesses+aprince is offline   Reply With Quote
Reply



Thread Tools
Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 05:34 AM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: