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Old 08-31-2013, 06:18 PM   #1
MammaKat
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advice son now on peritoneal dialysis

Hi!

in the last 30 days I have gone from having 3 basically healthy kids to not.
A stomach ultrasound on my son Chris showed an issue with his kidneys which needed to be referred to a pediatrician. luckily we were able to get in within a week.
The pediatrician was a locum (helping out a friend) who is also a Nephrologist (kidney specialist).
He did some blood work. we saw him a week later to find out my son had 10% kidney function. He said we would need to be seen at the BC Children's Hospital - about a 6 hour drive.

We were there to be seen 6 days later. then a biopsy the next day. August 1st. Chris was put on a strict diet and medications.

we went back Aug 12th for follow up and discussion. they said he needed to start dialysis and in our province, it was either move to Vancouver for hemodialysis 3x per week, or nightly peritoneal dialysis at home. they prefer to do peritoneal dialysis on kids as it's gentler on their systems.

We were told we would probably get in within 3 weeks for the surgery to implant the catheter for dialysis. 2 days later they called and said they were doing it August 22nd. AND that he and I would need to be here for 3 weeks!

Ok, I'm a single mom of 3 kids. I'm lucky to have some great friends. My 14 y.o. DD is staying with them right now so she doesn't miss school. they are on a quarter system of 2 classes 10 weeks, so missing 2-3 weeks means don't even bother. They are also rearranging my house to make room for the dialysis supplies - 60 cases of stuff every 2 weeks.....

So, here's the rub. they tell me travelling with this type of dialysis is great, because our supplies are all covered by our medical and they will ship supplies anywhere in the world!
They will ship directly to Disney World Hotels and Cruise lines and take care of arranging it all with Disney! I just have to bring his cycler (size of a carry-on suitcase) meds, and sharps container.

So, We are wanting to take a cruise.

Has anyone had any experience at WDW with this type of dialysis???
We would be doing 1 week cruise and 1 week at a DVC studio or 1 bedroom.

Help!!!!

Kris
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Old 08-31-2013, 09:10 PM   #2
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Hi,, Just wanted to send you some
I am sure one of our fellow Passporters will be able to give you some advice..
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Old 08-31-2013, 09:39 PM   #3
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Just want to send some

Hope someone here can give you some advice.
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Old 08-31-2013, 10:22 PM   #4
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hope you get all the answers you need !
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Old 09-03-2013, 11:15 AM   #5
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Hello there! Welcome to the forum. That is quite a story. I'm so happy you are planning a little magic.

I don't have experience with this, but we have a nurse member who, I think, will have some good advice when she checks in.

Have you contacted a local Occupational Therapist who can get to know the specific details of your needs? That might be your best bet for a plan.

Please keep us posted!
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Old 09-03-2013, 03:57 PM   #6
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I have a couple of friends on hemodialysis who use the clinic in Celebration for dialysis when at WDW. I don't know anyone who does peritoneal, though, so I can't help you with experience getting the supplies and set-up in your room. I hope someone pops in soon who can give you some reassurance.
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Old 09-04-2013, 12:50 AM   #7
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Thanks everyone for the good wishes!

We're learning more every day that we are in training..... So looking forward to knowing what we're doing and can be confident to travel.

Our PD Dialysis nurse has explained about the supplies etc. I'm just hoping to find someone else who's traveled with this system.
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