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.

A new normal

Cleaning house has been going....
I'm not sure if I can say well (yet), but I think it has potential.

It has involved a number of emails back and forth with our nurse. And some trial and error. And a couple of very large blow-outs. You need to laugh so you don't cry blow-outs. All I could smell all day was poop blow outs. Funny, right?
(Maybe now)

So I knew that we were doing something wrong.
And of course I'm a little bit ... lets say independent ... in my thinking and questioning and knowing what I want and how I think I should do something that I want. Like the bowel routine.

In my last post I discussed various sources of information. So I thought that I would share what I learned.

Timing is important. Specifically if you rush it, you will have blow-outs.
The internet-only information said "as fast as he will tolerate". Our nurse says "at least 5 minutes". And there is also the time for fluid to work that is needed.
So a little bit of timing changes and no more blow-outs.

I also found a research article explaining the process of what they are doing at the Cincinnati Centre. It reviewed what goes on during the week you are in Cincinnati, which we aren't going to be doing, but I thought it would get some basics down.
It did give me some questions to explore (they don't use cones, but foley for irrigation). And it helped me to understand some of the physiology of the spina bifida bowel. I gave a copy to Nick's pediatrician because he didn't know that much about the bowel program.

I've been keeping track of everything so that I know what is going on. I think it's the nurse in me - I always have to chart! I have dates, times, amount in, timing and results (just a check mark).
I'm told it takes 6 weeks, we are about half way there and I've learned things. A lot of zero's on my chart have me sure we are on the right track.


I am excited. I am trying not to be excited. But I can see it.
Big boy underwear.
I've been looking at them in the store. Pulling some off the shelf and then putting it back. I never would have thought that the thing I wanted to buy most in a store would be size 3 boys underwear.

So here we are.
It has been a change in our routine to spend 1 hour in the bathroom.
I can recite the backyardigans dvd we play by heart. But Nick is tolerating it well. It provides some one-on-one time for the 2 of us. And this is just the new normal for us.

Cleaning House

If you don't care about poop - you might want to skip this post.

Tonight is the night for us to take the next step.

In the journey of spina bifida, continence seems to have the most impact on daily life. Not mobility, not if someone is walking or not, talking or not. It's pooping and diapers and bladder issues.

 Because that leads to social issues. I remember that day in the office, when I was questioned about keeping the pregnancy and hearing "diapers for life". And I thought we can handle that - and we can. But do we have to? Or can we have social continence. This means that we do things so that socially, when we are out of the bathroom, Nick won't have to wear diapers.

Which has led to me pushing (pretty early) to work on getting him clean. Starting with a potty over a year ago. And progressing through the different steps (starting from 6-9 months old)

• Diet (I had a great dried fruit combo that kept Nick regular when he was a baby), and staying away from cows milk (he still drinks almond milk or goats milk).
• Oral laxative (PEG flakes) that we put it in his oatmeal every morning, and we can adjust it up and down depending on what we need. Right now we are at 1tsp every morning (but have gone up to 3Tbsp when we really need it)
• We have tried some other medications lactulose (didn't like it, didn't work, it was a liquid and he needed to take it too often for it work into our lifestyle)
• Senna we haven't tried. I've heard very negative things about senna and want to stay away from it for now
• Omega-3 and probiotics, we used this as a supplement for a while and it made a huge difference, but we still needed the restoralax. We are on a break right now, but I find it makes Nick smell like fish for a while. Will probably start it again soon
• Stimulation. I won't describe it, I'm sure you can figure it out.
• Suppositories. Again medication, or just glycerin (which did nothing for Nick) that we  have been trying for a while. We've tried it and have found that it is great for preventing him from being constipated, but it just isn't working for getting him clean.
• Enemas. Using liquid (with or without something added to it) to clean out the colon more completely than the suppositories will do. The more comes out at one time with the enema the less that can come during the day. That is how he is clean.
• There are different types of enemas.
• A regular tip enema, but I found that using this (like a fleet enema) doesn't work. Nick doesn't have the muscle control to tighten around the tip, so the fluid doesn't stay in, which is the whole point. So this hasn't worked for us
• A cone enema, is our next step. It is typically used for cleaning out colostomies. And it is cone shaped to fit into the hole of the colostomy, but we are using it for a different reason. The cone shape means that we can create a stopper without the muscle control. So the fluid that goes in, stays in to work, and when the fluid comes out, so does all of the poop in the colon.
• Surgery. This is the final step. But we are not there yet. There are 2 different types of surgeries, which we will explore more when the time comes. But it takes the enema solution and starts at the top of the colon, around where the appendix is, and cleans the colon from that point and down. It seems to me to be the most effective way, but also the most invasive - because it involves surgery.

We have also been doing (for a while) some other things to maximize our results.
Bearing down, have you ever tried to teach someone how to do this? Think about it for a sec, if it doesn't come naturally, what do you say? I feel like I'm at work some days (helping women have babies). Some things that have worked for us is laughing and lifting his bum off the toilet seat.
Positioning. We have him sitting on the toilet (gravity) with a stool to keep his knees above his hips to help.
Timing. You bowels are most active about 20 minutes after you eat. So putting Nick on the potty after dinner has worked well.

So we put all of this together, did a lot of Internet searches, talked to people and got our medical opinion. And we started day 1 of a bowel routine with a cone enema.

There are a number of different websites we used, but the one with the best step-by-step instructions was from here http://lifestyleaccelerator.com/myblog/health/bowel/ and she actually has a video to go with this. http://youtu.be/_hINaZkGWwg

Then I had to figure out what to actually purchase.

We ended up with the product from Hollister and I searched to find the best deal online at Canmeddirect What we needed was a kit with the bag, the tubing and the cone. About $50.

It took over 1 week to determine if what we purchased was latex-free.
Nothing on the packing says anything about latex, which I was very surprised by. And when I looked in the Hollister website, I found their response was very confusing.

The specifications for Hollister ostomy products do not include natural rubber latex as a component. The specification for products and packaging do not include natural rubber latex as a component, and our component suppliers do not add natural rubber as part of their production process.

 So of course I put the quote on facebook and got every one's opinion. Which is that legally companies are no longer able to say "latex free" so this is the wibbly-wobbly way of saying that it is latex free.

So. With my head full of all of this information, all of my supplies present and accounted for, our bathroom appropriately set up (we put a hook on the wall above the toilet to hold the bag), I printed out all of the directions I could find. Had directions from our nurse for the type of fluid to go in the bag (I have seen a wide variety of different recommendations for fluid).
I also had a bag of toys, a dvd player and some books ready to distract Nick to sit on the toilet for 30 minutes. And we talked about it.

I told Nick that we were doing something different today to help him poop. He was positive about it (which is good considering he hates when I have to help him poop).

And it went well.
It didn't bother Nickolas at all. He wasn't bored sitting on the potty and we got results. It wasn't messy, no leaking around the cone and it was easy.
After 30 minutes on the potty the diaper went back on and we were ready for bed.

I'm chalking it up for day 1 success.
But just because day 1 went well doesn't mean anything. But I'll still celebrate today's success!!

I also shared my knowledge on my "I want to learn about spina bifida" blog too!

Spina Bifida Clinic - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!

May there be Poop!

Anyone who is squeamish or not interested when they see the initials T.M.I. you might want to skip this post.

I have been looking and thinking about poop for the last couple of months.
The polite way of discussing poop is 'bowel management'.

I am so ready for some bowel management!
Nickolas has been dry between cathing for a while, so it's just poop right now.

I have dreams of getting him in big boy underwear.
I know it is just a dream right now. I know it. But I still have it.
So I've been looking at ways to get there.

I've talked alot with Julia our nurse at Bloorview, both on email and at baby group, about what we need to do, and she's had a number of suggestions. As well, our January education session involved poop talk, and we all got copies of this chart.

 I have started to record what we get and when, and how. I have a whole excel spreadsheet (that Jennifer - our daycare - has been wonderful in not thinking I'm crazy and filling out).
My plan is to try to figure out what works and what doesn't.

We have been fighting differing degrees of constipation for a while. And I'm really sick of it. I want something to clean him out so we don't have the constipation.
And of course being clean in between.

 I know this is not something that happens over night. And I know that we are super early in trying to get a handle on this. But I still want to try.

I've also been doing my research.
Through SB University and their bowel session. Also I watched a online web session with Dr Levitt at The Colorectal Center through Cincinnati Centre. I've looked all over and can't find the link.
I took notes.
They have a whole bowel management program to get kids out of diapers starting at about 3 years. (OK we aren't at 3 years yet, I know that).
Part of this program is a 1 week program using contrast and x-ray to actually visualize that what you are doing to clean kids out, actually is cleaning them out.

So we are just in the beginning of my clean-out project. I know this is going to be one of the most challenging parts of our spina bifida journey. I know we'll get lots of bumps in the road and I'm probably setting myself up for failure by starting so young, but I'm a bit impatient.

So far our experiences have been
Glycerin suppository - doesn't move anything.
Fleet (or saline) Enema - works, only if it stays in. And very messy
Julia doesn't recommend the enema because it is more difficult to stay in. She recommends going the suppository route for now.
- and after a couple of recent messy attempts that really got us nowhere, I'm finally listening to her.

Our newest line of defence, which seems to be working is another suppository. Child version (5 mg - or half of the 10mg).

Sorry again if this is all TMI, but I did warn you.

I have also been looking at getting out of the store diapers and into more cotton ones - more big boy underwear?
Not really ready yet, but these are where I've looked so far.

http://www.etsy.com/listing/72908455/cotton-toddler-boys-training-underwear

And these from Pampered Tush - Gretchen raves about them, and so they have experience with spina bifida.

http://thepamperedtush.com/gallery/cotton/trainers/

I'm amazed at the products that are out there today!

Oh Poop!

I hate poop.
I hate that I worry about poop.

Nick has been constipated. Pebbles constipated. For 5 days.
Over the weekend I kept increasing his PEG and expecting it to get better, but it wasn't. Then I had to sit back and think about how long it has been worrying me. On Friday - yes, on Thursday - yes. Today is Monday. I couldn't wait any longer. Nick was definitely severely constipated, and it was only getting worse.
It was actually the worse I've seen it.

I have been worrying about it. Really, really worried. That I actually call his pediatrician. And I NEVER do that!
But after a couple of phone calls back and forth, some trips to the pharmacy, asking questions on BabyCenter and Facebook and if it doesn't work the first time - try again with more volume. We got it!
Yup we got poop.
It only took a top-down approach of medication, and a bottom up approach of suppository and enemas.

Sometimes I think I overthink the whole poop thing.
I worry about impaction, and shunt blockage because of the impaction and surgery because of impaction ect. Kyle thinks I overreact sometimes. I don't think I do.
Nick has a whole regiment around poop. He has 3 different medications just for poop - PEG flakes (ie. miralax/restoralax), omega-3 oil and probiotics. We are very proactive with poop medication. As well as fibre in his diet (maybe not as much as we should - but he's 2 and he's starting to get picky). I'm a bit obsessed about his poop, and really don't think it gets assessed like it should unless I do it myself.

Generally we are on the poop ball. I adjust dosages and things start working in 48 hours. I think I'm on top of it - and then this happens. And I feel like I know nothing - again. I feel like I've lost control!