ACE stopper

I talked to the nurse about an ACE stopper to put in the belly button to help to prevent the hole from closing.

There are a couple of different sizes, the diameter is the diameter of the catheter you are using (10 Fr) and the length is in mm. It comes in 15mm, 30mm, 60mm.

They recommended the 30 or the 60. But when I went to the store they only had the 15mm (or I could go up or down diameter, which I didn't want to do). 

The 10/15 size doesn't sit in that well, I've used it a couple of times and it falls out. I'm hoping that when the 10/30 size comes in, we won't have that problem (and the 10/60 size she said might irritate him).

The hole is staying open so far doing this, and I'm going to use the ACE stopper for days that I can't do the morning catheter. Covering it with a folded gauze, that helps the stopper stay in place in the belly button, and a clear tagaderm (rectangle and see-through, they usually cover IV sites with it.)

They gave us a bunch at the hospital, and I think you can buy them at the store.

It lets us keep the stoma from closing, it stays in place.

This is what it looks like underneath the bandage. And then the bandage keeps the top against the skin. Nick has started to get some irritation from the dressing. So I'm keep an eye on that.

Nick can move around and it doesn't both him. It is made from silicone and move around.

**since I wrote this post we have been having issues with granulation tissue. I think the origin of the granulation tissue was cause by the ACE stopper rubbing against the skin, because it didn't sit flat against the skin. I'm not sure if this is an issue that all ACE stoppers in the belly button or just the way that Nick's belly is.

So we are no longer using an ACE stopper overnight, but I will use it to 'catheterize' the stoma in the morning because it is small and easy to use and clean instead of using the catheter.**

Halloween sneak peak

Michaelangelo wants to give you a sneak peak at some Halloween costume ideas

 

 

 We have the wheelchair and the walker to do.

 

A sneak peak at Katheryn's costume as well.

6 weeks to go!

Underwear!

For real this time!

We have the solution!
Good nites Tru-fit underwear (the link seems to be broken, all I get is a stream of letters), but you can google it.

It has been 6 weeks since the MACE and we haven't had one single (knock on wood) poop accident! Even with skipping a day, and once two days, and no accidents.
We are still having some leaking, but having a whole diaper for a bit of leaking is over kill. So then I'm trying to figure out what to do. We've tried the pads over the last year, and they slip around or bunch and leak.

I've seen the Tru-fit underwear before and the pads. The underwear is $27 for 2 pairs of underwear. And I thought that was waaay overpriced, but I bought the pads to just put in regular underwear.
The thing with the true-fit is that there is no sticky backing, so of course the pad didn't stick to anything, and actually fell out.

So when we went on vacation at the end of August I bit the bullet and paid the $40ish for 2 pairs of underwear and a pack of (18) pads. After just a couple of days I couldn't believe how well they worked. They are FANTASTIC!

They are regular underwear, that hold a pad in place, to catch all of the pee.
 We have only had one time of leaking out of the underwear, and that was when I put on Nick's underwear I didn't make sure his penis was actually on the pad. It wasn't, so of course when he leaked it wasn't onto the pad.

We've been using the underwear every single day for 3 weeks and that is what I am sending Nick to school wearing. Real underwear! To school!

The difference between the underwear is an inner liner that is made to fit continence pads, while the outside is regular underwear. I've now bought 6 pairs of underwear so we have enough to get through the week.

I've been looking to see if anyone can sew these liners that I can just clip into regular underwear, but I can't find anybody. My sister wasn't able to, she was pushing cloth diapers that do the same thing, but I really don't want Nick to carry around peed-in liners when he is in school.

The outside looks just like regular underwear

Nick isn't as excited as I am. He says he likes wearing the diaper, which he still wears overnight. But once we get the underwear on him he is good.
We use the tru-fit pads at school, which are bigger, but more expensive. And at home we use regular adult incontinence pads, which still fit but are a bit smaller. They have a sticky back, but I don't stick them on.

*I wondered about latex, the amazon.com sites says that it is NOT made with natural rubber latex!

This is such a great creation. I'm so glad we are able to use them!

School Time!

Katheryn is all ready for real school now! Grade one!

She started last week (and still enjoys going), which is always a good sign.

 

She gets to sit at a real desk (surrounded by boys), and her favorite parts of the day are recess, gym class,  and the library. She has all of her friends in the class with her and she likes her teacher.

I've been trying to ask how school is going without asking the same questions every day.
What was your favorite thing you did today?
Did you have fun?
What was your favorite thing you learned today?
Who did you play with?

Nick's first day of school was today.
His second (and final) year at Campbell's Children's School for senior Kindergarten

Nick had a great day at school. Some of his friends were still there (including a little girl he talked about all year) and some new friends, including Alejandra that we've known for a couple of years (and who also has spina bifida).

Nick wanted to have a Ninja Turtle picture. So this is Nick with his nun-chucks

Nick is just jumping right back into school-mode. He is in the same class, same teachers, EA's he knows, same bus.

Back to school has been great so far!

School Pamphlet

I updated Nick's school passport/pamphlet for the year. I just updated the one we did last year. It was a challenge to talk about the MACE without freaking anyone out. And add the bathroom issues without being TMI.

I plan to update it every year with new pictures and information. Of course on the front is all fun things about Nick. Then when you open it up it has the medical stuff (what is spina bifida, scars and hydrocephalus and shunt malfunction. Also latex allergy and common latex items in school, finally the bathroom issues.) On the inside is mobility with pictures, AFOs, canes, walker and wheelchair. on the back is more about Nick. What he enjoys how he has fun. Followed by how he may need help. At the back is about our family and contact information.

(And I just realized no blog address)

Please feel free to use this if you want to copy it for your own child.

School Pamphlet - Sept 2014 - OnLINE