Peanut's surgery is scheduled for 7:30 on Tuesday morning. We have to be admitted at 7 am on Monday for bowel prep all day. That means an enema followed by GoLightly. I think the name GoLightly is a joke! She will definately NOT go lightly. She will go a lot, and all day, and hardly lightly. It's a messy icky thing. Don't you wish you were me on Monday? LOL Ugh.
Surgery is scheduled to take three hours on Tuesday. She will come out with a catheter in the new Mitrofanoff stoma, clamped off. She will also have a suprapubic catheter attached to a drainage bag. That will be used for two weeks, while the Mitrofanoff tract and stoma heal. How do you handle a drainage bag on a kid who crawls? A kid who rolls all around in her sleep and often disconnects her feeding tube? A kid who is NOT going to be happy sitting in her wheelchair all day at home? I hope they have some good advice!
I have been told she will be inpatient anywhere from 2 days to 2 weeks. Hmm .... nice variable there eh? I am planning for two weeks, so anything less will be awesome. I am packing and packing this weekend. When we check in Monday morning, it will look like we are going on a trip! Pillows and all. There's just something about having my own pillow to sleep on.
Please keep my Peanut in your thoughts this coming week. I'm told it's going to be rough!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
10 comments:
Absolutely.
Lots of prayers for you and Peanut.
Sending prayers!
Thinking of you
You will be in our prayers lil Ms. Peanut. Make your mommy keep us updated. This is surely of special interest to Annabel.
Oh the yucky bowell prep. Ugh. The surgery will go great and she'll be home soon. That is quite the variable time frame. Sheesh.
I wonder about that tape that sticks to itself? Coban? They sell it in wide widths, so you could wrap it around her belly to keep things secure. Yeah, some things must be harder when you have a child who can move all over the place! You are in my prayers.
We are praying for sweet peanut!! I hope everything goes well on Monday!
Praying that everything goes as well as it possibly can! Give Peanut a hug and a kiss from me! Hugs to you too!
Hi, thinking about you guys today. about the catheter, TAPE, TAPE, TAPE. Usually they are pretty good about taping stuff in place. Emily didn't crawl so I didn't have to worry about that part of it. Make sure they continue to give lots of water/fluid to keep the urine clear. We went home with the catheter sewn into the Mitrofanoff and came back later to have it removed. Just watch for bladder infection, that is probably the worst part of it. If she doesn't get one you guys will probably be home free! Yippee, you'll love it!
Michelle & girls in WA
I am praying for you ALL! And I've added you to our prayers chain at church as well. I will be thinking about you guys this week. Keep us posted when you can!
And although I know if wont as gross as what you are going through today.... i will pleasantly think of you as i change all three one year old's poopies today. ;-) these are poopy girls lately!!!
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