Monday, April 14, 2014

Decisions, decisions

Kyle and I have some decision to come to and make for Nickolas.


Nick's potty issues have progressed over the last couple of years.
Jan 2012 - sitting on the potty, and actually sitting and a potty instead of just lying down
May 2012 - trying suppositories to get things going, every day routine
April 2013 - starting the enema routine nightly
July 2013 - buying underwear and bought a whole bunch of continence pads (haven't used that many of them)
August/October 2013 - travelling and still completing enema routine nightly
September 2013 - starting school
December 2013 - re-evaluating and changing enema solutions
March 2014 - Downtown for March Break with Daycare group, poop-blow out and completing the day wearing no pants
I returned to shift work, and consistent timing of enema routine becoming difficult
April 2014 - Trip downtown at Aquarium, poop-blow out x3, went through all the clothes we brought with us

We've been steadily moving towards the next step. The surgery step.

I have known that this would be where we would probably end up. But I was never ready before. I wanted to try all of the other non-surgical options and know that we tried before taking a more invasive step.

But we've spent a couple of years trying different things and we are still having difficulty. Nick has also started to notice things more. He has been saying that he is not friends with a little boy at school anymore because he called him a baby. And last week he said that he was called a baby because he is wearing diapers.
And his face screwed up and he started crying.
I did not start crying (even though with him in my arms for a big hug I really wanted to). But in my mind... and heart... the decision was made.


We have tried and tried. We spend 60-90 minutes every single night/evening, no matter where we are or where Nick would rather be, to get Nick clean and it still isn't working!
So I have done research, the doctors have recommended it, he is an appropriate age. The surgery will help to clean him out, effectively.
And Kyle is in agreement too.

Nickolas says he wants to be out of diapers. He's not at an age where he would/could make a decision for surgery. But he's also at an age where he will recover quickly and won't remember the hospital stay. And young enough for kids not to be too mean





But what is the surgery?
I have talked about it on this blog before, but here it is again.

This is the digestive system

Right now what we do is a retrograde enema. It is a bottom-up approach, so we put fluid in 'the bottom' and push fluid up through the colon and collect and flush out the fluid and poop.

The surgical options allow a top-down approach. So if you want to flush out the colon, you start with the colon, put fluid in and flush out the fluid and poop together. There are 2 different surgical options.

The caecostomy button

 Also known as cecostomy (I'm Canadian so we like sticking 'a's all of our spaellings), This is plastic tube that it insertered through the abdomen into the cecum of the colon and stays in place with the curly tail. It can be done with local (freezing) anesthetic and is more of a radiological procedure than a surgical one.


The colon is flushed through this tube. and a plastic button is on the tummy.


This is a pdf patient education package given to families in McMaster Children's Hospital that helps to explain it. It has a faster recovery and shorter hospital stay.
But it is a plastic-foreign body, and the tube will need to be replaced (the Hamilton document says yearly). This is what our nurse recommended last year when she talked about, it is faster, less invasive with less recovery. But it is also temporary and needs to be replaced as well as a button sticking out of the belly.
When we talked to the urologist, who is also a surgeon (who of course knows and recommends surgery) did not recommend the button because they said it is more of a trial and error to get the tube into the right place, even guided by ultrasound and it might take multiple attempts to get it into the correct part of the colon.

The MACE

This stands for Malone Antegrade Coninence Enema (or just plane Malone) and it is surgery. The appendix is attached to the colon.


With the MACE the appendix is brought to the belly button to create a stoma or a hole in the belly button that will allow you to put fluid into the colon. There are valves that allow catheterization of the appendix with the fluid, but poop doesn't leak back out.


There isn't any plastic button, and no plastic tube. For the first month or so a tube is left in so that the stoma/hole won't close (like a ear-piercing). The surgery can usually be done laproscopically, so there isn't any large scar. (and I asked, it won't interfere with the end of the shunt tubing)


 But it is surgery. From what I've read it takes about 2 hours under general anesthetic. There is a prep that takes 2-3 days (and may require hospital admission) and there is more recovery involved. And with surgery there is pain and recovery involved. I have heard that the recovery is hard. Pain control options (i.e. an epidural) might not be an option because of the spina bifida, so a PCA morphine, which isn't as effective would be pain-control of choice. The hospital stay is about 5 days or so.

There is a pdf patient education package that helps to explain. I also found another pdf (that I can't download or print without paying money, but I can view) about parents opinions and experiences with the MACE, and spina bifida parent groups with lots of information and experience.



I am still worried and nervous about making a decision to hand my child over to a surgeon and the recovery involved, but from what I have read and heard from other parents it is worth it. I think that it will give Nick freedom both in the bathroom and socially.

We have our spina bifida clinic in a couple of weeks, and we'll have that conversation and get ready to take these steps. Even timing, we are thinking this summer. I am not sure how flexible timing is (the surgeon we talked to last year made it seem that it won't be a problem to find a time that works for us). Our July is full of camps, August is clear and we don't want him to miss too much school in September...

I'm taking lots of deep, cleansing breathes. But I really feel that the timing is right for this decision.



Tuesday, April 8, 2014

Dancing to their own beat

The kids got their groove on!


Nick loves wiggling that bum!

Thanks to Grandma for the card that was the inspiration for this Dance Party!


Monday, April 7, 2014

Underwater

I got an underwater camera for Christmas, so of course I had to try it out!
I had a blast with it!
 

The kids were not as impressed with it as I was
But Katheryn was game to try until I got  good picture

 
And Nick didn't really have a choice, but it only took a couple of attempts to get this one
 

And they still liked the water after I got my masterpieces, so we were all good!

This was the closest I got to an underwater picture of Kyle

Saturday, April 5, 2014

Happy 6 years!

6 years ago, this little munchkin was born
 

And somehow this little tiny baby became a big girl! 6 whole years! It's like a lifetime and a moment at the same time.
 
 
For Katheryn's birthday this year we decided to take our family gift cards to Great Wolf Lodge and have a big birthday weekend!
 
 
When we arrived, Katheryn had her own present waiting for her!
She has been sleeping with this wolf ever since
 

No... I don't think she is happy and excited at all...


Katheryn was very particular that she didn't want to open any presents until her actual birthday.
And also that because it was her birthday we had to do everything she wanted to do

Like being the pool all day


Telling everyone she is 6 years old

 
Playing with her brother in the big pool
 
 
And go on all of the kiddy slides
 

Part of the birthday package had a cake. I brought candles and a lighter, so we went back to our room and blew out candles (singing in the restaurant didn't go so well)


There was also the dancing to the Birthday card... but I posted that earlier

She had an amazing day! And we were all exhausted at the end of it.
More Great Wolf Lodge pictures to follow!




Monday, March 31, 2014

More Summer Camp!

We have been wanting to continue with conductive education for a long time. But differing commitments always prevented us.
But I have kept in contact with the conductors (the instructors and therapists).

When the summer camp schedule came out I was really hoping that we could fit it in. At first glance it looked like we wouldn't be able to make it. And we signed the kids up for regular camp.

But after talking with them about going for part of the camp, and talking with my parents to see about transportation, we were in!

I am so happy that this year we are going to be sending Nick for part of the camp. 10 days of all day camp of conductive education.
Pushing him and being creative, learning how to be independent and being aware of what he can do.

I'm so excited about those days.
Yes it's camp and fun, but it's also therapy.

Nick has also had the opportunity to star in a March of Dimes ad!


I have also found that Nick is a conductive education mascot through another helpful site too! http://www.threetobe.org/our-initiatives/academy-of-conductive-education/