CM1 Surgery Questions...

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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CM1 Surgery Questions...

Postby NatesMom » Mon Sep 28, 2009 11:07 am

My 15 month old is having PFD w/Duraplasty in a couple of weeks. What sorts of things should I be prepared for? Will he be sent home with some sort of head protection? He is still learning to I would think that he'd need something back there.. Also, in your experiences, what should I pack for our stay in the hospital? Other than a change of clothes and shampoo... Have you gotten up there and realized there was something you needed that you should have packed? Any advice will be extremely helpful! Thanks!
Last edited by NatesMom on Thu Oct 08, 2009 2:05 pm, edited 1 time in total.
Mom to Nate, a beautiful 1 yr. old with CM1
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Re: CM1 Surgery Questions...

Postby razzle » Mon Sep 28, 2009 11:17 am

here is a good list to get started .
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: CM1 Surgery Questions...

Postby Becky1219 » Wed Sep 30, 2009 9:56 pm

Bring not only his favorite "lovey", but a couple of back ups. If you can find a kid's flashlight with interchangable caps that show different pictures, that is perfect for when they can't sit up completely. We spent hours shining Jack's "Toy Story" flashlight on the ceiling to entertain him after his tethered cord surgery. His roomie enjoyed it too. If he will be at a Children's hospital then they should have lots of toys and books to borrow, but if not, then pack his favorite books. The hardest part is keeping them happy the day or two after surgery when you can't hold and cuddle them yet and they are so young they don't understand why. Keep him comfortable by making sure he is getting his pain meds on a regular basis, sometimes the nurses get extremely busy and lose track of timing for meds. Do as much of his care as you can, he will be happier if it is mommy changing his diaper and not the nurse that just poked and prodded him. These are the things at the top of my list for hospital stays. If you want more ideas or have questions let me know. Jack is 2 and we lost count after 120 days in the hospital, so unfortunately we are pros at hospital stays. He has had 4 major surgeries, but not PFD yet. Also, if you haven't created a caringbridge site or something similar that would be very helpful to keep family and friends informed without having to make tons of phone calls or sending individual emails. We always take our laptop and update from his room. Here is the link to Jack's site if you want to see an example:
Good luck, I'll be praying that things go well!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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