Friday, August 15, 2014


Nick continues to heal.
I got the all clear from clinic today that things are healed, no infection, everything is working and we got cleared to go swimming!

Before the surgery I really wanted to know what everything was going to be looking like. So I have been taking pictures of Nick's belly button to show how everything has been healing. If you aren't interested in seeing a whole bunch of belly button pictures, feel free to skip this post.

Day 7
It's starting to heal. I think the catheter was irritating it.
As it has been healing it has been having some discharge, pinkish. So I have used some gauze and taped it just below. So it can still get some air to help it heal, while protecting it (and his clothes)

Day 11
Some bruising is showing below the belly button.
The laproscopy incisions are healing well, he doesn't need any bandaids or anything on it.
Still have the tape/gauze on during the day, but it's healing well.
Still having some drainage, but less pinkish and more clear/yellow. Doesn't smell bad or anything

Day 14
I'm not sure what the redness is, I put some polysporin on. There is still some drainage and I'm not sure if it is just irritation. We have clinic tomorrow so we'll see what they say (and they said it was ok, it was less red by then as well).
Tomorrow the tube comes out!

Day 16
The tube it out, no more tape and dressings on his belly!
The redness and the drainage decreased once the foley came out.

Wow where did that flat belly and ribs come from!

This is a picture I took before the surgery to use as comparison. Nick has always had a bit of a swollen belly. I think that this shows how effective the MACE is, by actually clearing him out from the top down.

Day 19
I can't believe almost 3 weeks and it is pretty much healed.
And I think that I finally got all of the tape off! All of the tape and the bandaids have left his belly very irritated. So I am keeping everything off of him for now.

Can you tell he has a hole in his belly button?

When I go to put the catheter in, my finger goes right above the belly button, push gently and you can see the hold at the bottom of his belly button, but it is completely hidden during the day.
And Nick (for now) doesn't mind me showing off his belly to everyone

Everyone heals a little bit different, but this is how Nick has been healing. 

Wednesday, August 13, 2014

Flushing... the real deal

We had our follow up clinic yesterday, 2 weeks after the MACE.
The clinic started off kinda of weird, when the resident came in to see us and seemed to be surprised that we had been discharged from the hospital and had surgery. Um, yes that is why we are here...
I probably should have told him to turn around, read the chart and then come in and start again...

But once our actual doctor came in (with the resident) we got all checked out. Everything is healing well. There had been some discharge that I wasn't sure if it was an infection, but they said it was all healed nicely.
We will follow up again in 3 months.

Then it was time to take the foley catheter out, and show the nurse that we can do it ourselves.
I have the advantage as a nurse (and catheterizing 4x a day for the last 4 1/2 years) so I wasn't that worried about it.

I gave Nick my phone and he took pictures the whole time.

I have about 100 pictures from his perspective.
But I was able to take out the catheter, put another back in, flush it and we were done.
It didn't bother Nick at all

Tuesday night when we got home, it was time.
No more tubes were left in.

I got all of my supplies together.
The foley catheter, 60cc syringe for the initial flush, lubricant and the tube flush. 

The tape was recommended to use instead of blowing up the balloon in the catheter to keep it in place.
They said that they had one patient where for some reason the catheter twisted back into the small intestine, and when they blew up the balloon it caused pain.

The first night we taped it in. I didn't realize how much Nick moves around on the potty until we needed him to stay still. And the catheter came out. Nick wasn't very happy that his lap started flooding with fluid, but it didn't hurt him. And it was a lesson learned.
I've been using the foley balloon (why else use a foley and not a straight catheter?) and Nick hasn't been having any pain, and it hasn't fallen out.
So to add to my list above, a little 3cc syringe to blow up the balloon. After the catheter is in, blow up the balloon, and remove the syringe. When it is time to take the catheter out, attach the syringe, deflate the balloon and take the catheter out.

Another thing that they recommended was to push the glycerin in first. That will irritate the bowel to work the fluid in. So I mix 10mL of glycerin with 10 mL of normal saline, draw that up in the syringe and push that through. 
Nick really wants to do that job.

It was recommended to go slowly when increasing the volume of the flushes. So we just increased slowly over 2 weeks until we get to 350mL (+10mL glycerin) on Friday. I make the normal saline myself (using tap water) and then it goes in over 15 minutes.
Nick got some cramping at the beginning, but it seems to have settled. I slow it down if he gets cramping, but don't go too fast.
It has been so much more convenient for me, and has gotten Nick interested. It is also faster.
He sits on the potty for about 45 minutes, which is much better than the 60-75 minutes we were at before.

Nick has been a bit hesitant when I put the catheter in his belly button. The lubricant is cold and it feels funny. But it doesn't hurt and he will let me do it.
In the morning I put the catheter in (no flushing) and at night the catheter goes in and we flush. We put it in twice a day to prevent the hole from closing (like pierced ears).

Everything is going so well so far.

Sunday, August 10, 2014

Nick's Video

I've been looking to update my animoto video of Nickolas to show at an upcoming talk about spina bifida (it looks like I won't be able to do the talk anymore, but I still wanted to finish the video).
I am updating my video I did about 18 months ago to show off Nick as an introduction into what spina bifida is.

I was looking at the video from last year and though how much bigger he is, and how much more he is doing. And just wanted an updated view of meeting Nickolas.
He has grown so much!

Now I need to work on Katheryn's video!

Thursday, August 7, 2014

Out of the house!

To test Nick's endurance outside of the house, we decided to do a little outing.
Leaving the house I realized that it was the first time I'd left the house since we had returned from the hospital a week before.

So then the question was what can we do that is active (but not too active) for the kids that they will have fun. We decided on a local zoo, The Bowmanville Zoo, which is small and close to the house in case we needed to come back earlier than expected.

They also participate in the Access2 program that allows Nick to get in free (which isn't really what the card is for, Nick is supposed to pay for himself and his attendant, me, would get in for free, but I hadn't found any venues that will let the adult in for free and pay the child price - unless you are the Science Centre and have a pass, then you - with your pass - don't pay and he does. But I digress)

So we joined my sister and nephew and decided to see some animals. I hadn't been there before, but the kids had with my parents. As soon as we pulled in that was all they were telling me about.

"This is the zoo we went with Grandma and Papa, I got to ride the tea-cups, I got to see reindeer, that is the gift store, can I get a toy, can I ride the tea-cups, can I see the reindeer. Reindeer-reindeer-reindeer!" And then Nick took a breath so Katheryn could talk too
This is the boy that didn't talk for 2 years!

There were lots of animals to feed.
Katheryn was very brave and didn't have any problems feeding the animals. Sticking her food right into their mouth

Nick wasn't as brave, and just interested in watching Katheryn feed the animals.
As we walked around the zoo more, Nick started to get more interested in feeding the animals and by the end of the day he was ready. But he was still afraid to feed them with his hands, so he threw the food in. (Which I totally understand)

We went to the amphitheater for a show. Waited for 20 minutes to find out that there were stairs. There wasn't any signage or anything that said how it was or wasn't wheelchair accessible. Nick really wanted to see the show, so we left the chair and I carried him up a flight of stairs. During the show they mentioned that the doors on the ground level were for wheelchair use only (would have been nice to know).

After the show Katheryn found some rocks to climb.

Nick really wanted to go and climb the rock too!
So between me climbing the rock, and Auntie Laura pushing from below, we got Nick up on the top! I was worried with the pulling/pushing his tummy would be hurt but he was good to go, and so happy he got to climb the rock like his sister!

Katheryn came up again for a picture. But the rock was so steep, and shaped kind of like a triange, so there was no ledge so this was as close as the 3 of us could get.

There was still the reindeers to see and to ride the kiddy rides.
The reindeers weren't exciting, there was 2 gates that we closed, so you could see them in the background but not get close enough to feed or throw food at them. But Nick was satisfied.

There was some nice foliage, so I wanted to get some pictures. This is how impressed the kids were about that plan

Then Auntie Laura got them laughing. She was jumping around behind me. Trying to feed the 'animals' by pretending to throw animal food at them.

That definitely got them laughing!

Afterwards it was time for the rides.
There was one person manning both rides (the tea-cups were broken) so all the kids got to ride one ride, then get off and ride the other ride.

We were gone for about 4 hours.
Nick was tired when we got home, but didn't nap and was good just having some cuddles and watching Teenage Mutant Ninja Turtles on the TV.

The next day we decided to go out for lunch and the toy store.
Nick's appetite hadn't really returned yet, so I wasn't expecting him to eat a lot. But Kraft Dinner was on the menu and he was good, he wanted grapes to go with it. And he ate all of it.

We were taking some funny poses in the restaurant and they wanted to take some pictures of me too
The kids were really good sitting by themselves one one side and I got the whole other side to myself

Afterwards we went to the toy store and spoiled the kids a bit. That is one thing I've noticed about the summer, Kyle and I can't seem to say no to Nick or Katheryn. We gotta snap ourselves out of that!

Nick walked around all day with his walker. That is what he wanted to do.
He was really good and had lots of energy at the toy store, and afterwards we ran into the grocery store quick. Nick did not want anything to do with his wheelchair, everything was walker, walker, walker. He started off good, but towards the end he hit his wall. He didn't want to walk to the cash or the car, he only wanted to be carried (not going to happen with a cart and groceries, walker and 2 kids). So we slowly, with a lot of fussing, made our way back to the car.

Nick gets tired more easily, and I've noticed that he wants to be upright more (with his walker instead of canes or crawling). But I am amazed at his recovery. This kid just had surgery 10 days ago!

MACE related, we have the foley taped to his belly and Nick is always touching the end. We have it just hanging (taped and capped) under his shirt, but you can still see it... if you are looking. We also have a gauze over his belly button, taped just at the bottom because there is still some discharge as it is healing.
But none of that has held him back from the activities over the last 2 days.
Tomorrow it is back to daycare and work (for me)
He will be good.

Wednesday, August 6, 2014

Recovery - resting

Over a week since Nick's surgery and Nick is getting back to normal.
He's being silly and making people laugh.

And has been stretching his limits as well. Just like before his surgery, standing with one cane and standing on his own. Look what I can do!

He still needs to take more breaks and rest.

But he is getting more active, has started crawling to get to where he wants to go. But I find he likes being on his feet and use his canes or walker in the house.
I had told him not to crawl to make sure it wouldn't pull on his belly. But he is feeling better enough to stop listening to me (which I am taking as a good sign).

Nick's appetite remains a battle. This is what he wants to do during dinner time with his utensils. We get about 1 good meal into him a day. But he's drinking lots!

He has also been refusing his oatmeal, which has been a staple for years, and what I put his restoralax in. I've heard of this (and Nick did it before). Not liking  foods after surgery that he liked before (Nick stopped liking broccoli after his shunt surgery).

Looking at life returning to normal soon. I go back to work on the weekend, Katheryn returns from her own adventure and we are settling into our own routine.