Thursday, October 9, 2014

Shake it off

October is spina bifida awareness month in the US.
The parents and adults in my various SB groups are really knocking awareness up a notch this year!

A group put together this video, they asked for video's from the group to make up this video.
It is so fantastic!

In 5 days of posting, there have been over 17, 000 views!

Other part of their awareness campaigns are #embracethebif showing what spina bifida looks like, and a public group to show photos.
The SBA (American association) missed the mark (like the CEO... who does not have SB... advertising that she has a bum knee and can't run like she used to, as their campaign). All of this is driven by parents/adults with spina bifida.

Take a minute to watch the video and see what spina bifida really looks like!

Friday, October 3, 2014

Out Riding his Bike!

Katheryn has started Sparks, part of Girl Guides last month. She meets for an hour at the school gym.
The first night Nick and I dropped her off, went home, he fell asleep and 30 minutes later I had to wake him up and go and pick Katheryn back up.
Since it is in a nice and flat school parking lot (not like our street which is a hill) I thought it might be a great opportunity to pull out Nick's bike!
I posted a little sneak peak on facebook of Nick riding away from me (all by himself).
There were a couple of speed bumps in the parking lot. Nick would stop in front of them and ask for help. But I thought he could get over them himself. So he was going really fast, went over... and his bike fell over.
Now Nick is all strapped into his bike. A strap around his waist, his feet are strapped in.
Luckily he just got a bump on his elbow, (it is a 5cm bruise now), he cried a bit but wanted to go back out on his bike

He had a great time going where ever he wanted. Over here! Over there! In circles! He even went up on the ramp by the school doors.

He has so much fun we are looking for more opportunities to get him on the road (or parking lot)!

Tuesday, September 30, 2014

Annual Zoo Trip

We had our annual girls zoo trip.
4 of us from high school. 
(This was taken a couple of years out of high-school)

Over the last couple of years our four-some has grown, but we still all get together at the zoo!

The kids have such a great time together.
Nickolas wanted Emily to push him everywhere!

And Katheryn and Hannah were two trouble-makers running all over the place. Trouble 1 and Trouble 2!

The Toronto Zoo has lots of animals to see. As usual, spending a whole day there didn't let us see all of the animals, but enough to keep everyone happy

We got to see some animals up close

Nick liked the hippos at feeding time (they eat hay)

There was some things to climb on too!

Katheryn's favorite was the polar bears. The baby polar bear that we got to see shake like Sammie, or the one swimming up close to the glass

Nick found some turtles... that he named Michaelangelo.

And he got to freak out Auntie Laura by "touching" a huge spider

The price for the zoo was discounted for us as well. With the Access2Care card, I got in for free and Nick got in for half price! We only had to pay full price for Katheryn!

The only I wish is that we could do it more often!

Monday, September 29, 2014

MACE update - granulation tissue

The MACE continues to be working well.
The underwear is working fantastically!

Nick isn't having any pain, the stoma (belly button hole) is healed. We can catheterize the belly button every night and some mornings. If I find the hole is getting tight I do it more often. The ACE stopper helps, but I think the ACE stopper has caused, or at least contributed to the granulation tissue we are now seeing.

For the first 6 weeks there was some discharge from the stoma, not a lot, just a bit for it to be a bit wet, not even to get his shirt wet. I wanted to see if it got better if I didn't catheterize it every day. It did get better, but the stoma has gotten tighter slightly.
I can still get the catheter in without difficulty, it is just snugger.

In all, the MACE is still great and we are all so happy!

There is granulation tissue.

I didn't really understand what granulation tissue is.
This is what Nick's belly button looked like 3 weeks ago, about 6 weeks after the surgery

This is what it looks like about a week or so ago. It started off very small and I thought at first it was just a little irritation. But it didn't both him, so I tried cleaning it really well with soap and a baby wipe, (PS not the right thing to do). 
I used the ACE stopper, but it got worse. I tried just covering it, but it didn't make a difference and then Nick started getting irritated around the tape.

It looks like he has an  ulcer at his belly button. But it isn't. It doesn't hurt him. It did bleed a small amount when I started to touch it, but as long as I leave it alone it is fine.

I talked to the Nurse Practitioner who said that it was granulation tissue and gave me advice about what to do. She suggested a steroid cream and a saline flush. We had some corticoid cream left over from Katheryn's eczema, so I used that for a week.
And this is what is looks like now.

No all that much worse, but not better. So I decided to do some research (and advice from the nurse).

First I wasn't really sure what granulation tissue was. It is the body trying to heal itself, with new connective tissue. Like under a scab, but the scab isn't forming, just the new connective tissue. It also has blood vessels which are fragile and will bleed easily. It is not uncommon in the first 3 months.

This is a great article that talks about granulation tissue and experiences with a g-tube. If you are looking for information about granulation tissues, g-tube and other 'tubes' websites and support sites have a lot of valuable and been there information. There is also a pdf file that is easy to understand available here

These pictures are nothing compared to granulation tissue that occurs when there is a tube left in the stoma. But just becuase it isn't horrible, doesn't mean that we shouldn't still make it go away.

We are exploring some additional options to try them out.
1. Reducing friction. No more ACE stopper
2. Keeping it clean and dry. If there is leaking, protect the skin.
3. Steroid cream, we did this twice a day for about 10 days without any really improvement. It is steroid and the cream specifically says not to use for more than 7 days. We used the regular cortisol cream and there was talk about a strong steroid cream.
4. Saline flushes. To keep it clean and prevent any dirt. The saline can also help to dry out the tissue

OK we have done all of the above, now we are looking at some other things.

5. Maalox. OK Sounds weird, but this is what the NP recommended today. Get some plain Maalox liquid and dab it on, about 3 or 4x a day. *Just found out that Maalox is no longer available, if you google it you will get a bunch of conspiracy theories about why... who knew!
I am waiting to hear if any liquid antacid is ok to use
6. Tea tree oil, mix it with 5mL water on soak into a gauze and leave the gauze in place 2x a day.

The last thing to try will be when we get to our follow-up meeting in November, is Silver Nitrate.
7. Silver Nitrate is a chemical that burns the granulation tissue (silver nitrate sticks look like matches). Granulation tissue doesn't have any nerve endings so it doesn't hurt (as long as you don't touch healthy tissue).

Looking through what to do with granulation tissue, it talked about using vaseline to help to protect the healthy skin. We had been doing this, but not consistently. I'm wondering if we could have prevented this with using the vaseline more regularly? Also keeping the stoma clean and dry and protecting the skin and not having anything rub against it.

I've spent the last week or so learning all about granulation tissue. The good thing about this is that it isn't an infection, it is a normal body response (that we don't want to happen... but still normal). It looks sore, but it isn't. And we have treatment options.
I'll keep everyone posted!

Saturday, September 20, 2014

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.**