Tuesday, April 22, 2014

Broken Wing

Katheryn fell off our bed Saturday night/Sunday morning. It stands 3 feet high, and usually the kids will fall asleep in our bed, especially when I'm working nights.
Katheryn had wanted to sleep at the foot of the bed, which isn't unusual, and she's never fallen off.
But she did.
 
When I got home in the morning she was fine, she said it hurt and had ice on it, but it wasn't swollen, she could move it and it only hurt a little when I touched it. She was all calmed down from the night (she was very upset when it actually happened).
 
So mommy-nurse kicked in...
She can move it, still playing and having fun (keeping her arm still), not swollen. We will just keep an eye on it, it wouldn't be broken...
 
This picture was taken with Katheryn showing off the dress that Jennifer (her daycare provider) got for her.
Does she look like she has anything broken?
 

So I was trying to decide if we should go to the Emergency Department...
I know that Emergency Departments see a lot of people who are not necessarily emergencies. But we were in Bowmanville, and it usually isn't that busy, she wasn't improving and it had been over 36 hours...
So we went

2 hours in the waiting room. With Katheryn playing and singing "Let it Go" I could feel people looking at me like I'm crazy for bringing her. If it was a 4-6 hour wait, I might have agreed with them
And even once we got a chair in the back, still another hour of waiting.


 She was getting tired, but obviously not in pain.
Then we got some action...
Saw a resident, saw a doctor, went for an x-ray, walked back to the unit and got the result (and I saw it on the x-ray) that yes, her collarbone was broken... all in 20 minutes.

The nurses were very attentive when it was identified that yes it was broken, and traded in the cotton triangle sling they were sending us home in, for a colourful and more effective one.
(Not that we got lousy care before just, it was just stepped up a notch)


I was very proud of this girl! First broken bone, x-rays, emergency room and no tears!

And thanks to Lakeridge Health in Bowmanville for their free wifi, quick visit (3 1/2 hours is quick) and digital x-rays that meant the doctor had the results before we even left the room!

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

Sunday, April 6, 2014

Howling Weekend!


We spent 3 days and 2 nights at Great Wolf Lodge. After our trip in 2012 I wanted to come back. And we still didn't get to do everything they have to offer!

The bunk beds were not as fun as a couple of years ago during the night hours, but during the day they loved it!


We spent some time every day at the arcade, and the kids all had their favorite games to play
Nick won all of these tickets (200) playing a single turn/coin of a game!
He was so proud of himself!


Katheryn liked chopping up all of the fruit!

 
There was a lot of tough decisions before we left on how the kids wanted to spend their 1200 tickets

And of course we needed more time in the pool!

 

These floaties were great! Katheryn tried to swim a bit without them, but it was too busy.

 
The first day we spent in the kiddy pool, the kids didn't want to do anything else.
But the shallow water let Nick crawl around... and tear up his feet (not that bad, but some)


And we were close to the slides so they could try them out
Katheryn was very brave this year and went on all of the kid slides. The yellow and the green were her favorite because they were twisty.


Nick went on the orange one (his favorite colour). He went on it only once, and said he didn't want to go on again "because my legs might go up again"


When we went investigating we found a bigger pool that he liked a lot more.


Even if it gave him the opportunity to go underwater.


I wanted to spend time in the 'lazy river' which wasn't so much lazy as filled with people and tubes in a fast moving circle with times when water dumped on you
Nick didn't really like it


I liked just floating (as long as I wasn't run over by anyone) and Katheryn loved just running around in the water

But that was the extent of the exploration. No wave pool or anything that potentially dumped or sprayed water. There was also an obstacle course kind of pool that no one wanted to do.

But even if we didn't do lots of what they had. The kids had all of the fun that they wanted

 

I tried to get them to explore the big blue slide. But not this time. Looked like fun!


We had a FANTASTIC family weekend!


Fun and exhausting!