A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

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.


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.

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