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Forum: Children with Special Needs

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  #1  
May 12th, 2009, 08:55 AM
Dacontay4's Avatar Mega Super Mommy
Join Date: Jan 2009
Location: WI
Posts: 2,058
We've been here for a month! Since April 13th, and we're FINALLY going home on Friday! But OMW I am FREAKING OUT.

I spent all day yesterday in "home ostomy care lessons" with my nurse, taking ostomy pouches on and off of baby dolls, watching the nurses do it, practicing on changing G's ostomy, learning about everything that can possibly go wrong that I have to watch out for, like a prolapsed or retracting stoma, and what to do about it. There is so much to remember! Like when we start solids what foods to avoid and what foods to start her out on; how to care for her skin under her pouch; remembering all the steps involved in changing her pouch, cleaning her stoma, caring for her skin (I have an abundance of checklists!); trying to figure out what is normal for her and the difference between normal and diarrhea (she has an ileostomy, her bm comes out her small intestine so it's ALL diarrhea-ish); learning the MASS AMOUNT of terminology I need to know!

I'm going nuts! I'm extremely excited to go home FINALLY but I've never done this on my own. I still don't have the pouch changing down yet, it's so much to remember and my preggo brain doesn't remember! I'm so scared of messing something up! She's on several different medications now and I've got to keep a close eye on her poop to make sure there are no side effects. She has frequent follow ups for now so they will catch if she does have a reaction I miss...but there is just so much to do! I've got a crapload of paperwork and brochures and resources and there is no way I can read through them all! I'm anxious to get home, but I'm really scared about for the first time being on my own with my daughter, without the nurses there to help me and the doctors there if something is wrong. It's ALL me now. Dh will be there but I'm the one who's been through all the training...

I've got a few days yet to get it all down...but it's A LOT to get down in the three days I have left! I know how to do it all, but I still have to look at the instructions most of the time, and I'm really slow. I know before long this is all going to be like second nature to me. It's just that getting to that point...I'm so afraid of doing something wrong or hurting her, or having something go wrong and not having the doctors right there.

And I have a feeling it will be really hard to find babysitters for her from here on out. My mom was here the other day and she wouldn't even touch the stoma for fear of hurting Grier or something.

BUT Grier was up most of the day yesterday, she took 12 ounces of formula throughout the day, I got her giggling several times! And today she's already had 4 ounces! Obviously she isn't up to herself yet, it's only been a week but she's doing remarkably well. She hasn't seemed to notice her stoma yet...lol.
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  #2  
May 12th, 2009, 09:16 AM
Platinum Supermommy
Join Date: Mar 2005
Posts: 8,671
Big Hugs to you. I just know that you can do it, and you are right that soon it will become second nature. How wonderful that she gets to come home and you get to be back with your family.

As for sitters, maybe start with a mommy's helper type situation to get someone else acclimated to what all is involved.

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  #3  
May 12th, 2009, 10:19 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
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You will get used to it and this time next year you'll do it all without a second thought. ((Hugs)) I'm so excited for you and Grier going home! I can't wait to hear updates.

As for a sitter, I don't know. I was told an ordinary sitter won't work, I had to hire a nurse or RT. Obviously Ava has never been babysat!
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