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Old 02-27-2009, 02:48 PM   #751
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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
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Old 02-27-2009, 05:18 PM   #752
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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.
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Old 02-27-2009, 08:22 PM   #753
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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!
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Old 02-27-2009, 08:46 PM   #754
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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!

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Old 02-27-2009, 09:05 PM   #755
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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.

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Old 02-27-2009, 09:33 PM   #756
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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
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Old 02-28-2009, 12:41 AM   #757
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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!!!
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Old 02-28-2009, 01:33 AM   #758
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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!!!
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Old 02-28-2009, 09:59 AM   #759
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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!!
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Old 02-28-2009, 11:10 AM   #760
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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
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Old 02-28-2009, 11:19 AM   #761
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Ah poor sweet Becca. God bless that sweetie.
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Old 02-28-2009, 11:31 AM   #762
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I am so thankful that things are getting better. Praying for you guys always.

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Mom to three wonderful kids..
Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 02-28-2009, 12:15 PM   #763
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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!
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Old 02-28-2009, 09:26 PM   #764
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okay, so I won't send the Boudereaux's
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Old 03-01-2009, 07:18 PM   #765
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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.
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