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, July 7, 2014

Surgery count down

We have 3 weeks to go.
21 days

I'm trying to get all of our ducks in a row and worried that I'm forgetting something.

We've been talking about the surgery and trying to access all of the resources that are available.

There is a video through sick kids about preparing for surgery
I got a colouring book from work that Nick has been colouring and reading. He is really enjoying it. He is asking all kinds of questions and we've been able to talk about the surgery using the book. I didn't find anything on the sick kids website about a book, so I'm so glad I got access to it (Thanks Alex).

I have work all figured out, so I have my days off to be with him, we have Katheryn all figured out and going to daycare and then a fun trip with grandma and papa.
I went shopping and picked up a bunch of Teenage Mutant Ninja Turtle stuff for Nick. He is obsessed with Michaelangelo. So I have a blanket and a pillow for his bed and new PJ's for the hospital. I also got 2 seasons of the new Nickelodeon shows (and the 80's episodes are all online).
We also have bubbles, which are supposed to be good for distracting from pain.

Today Nick went for a pre-op appointment and bloodwork.
I had a toy I picked up for him (a small stuffed Michaelangelo keychain that talks) that I pulled out right when they were ready to poke him.
Nick was so brave. He was scared. He didn't want them to poke him with the needle, but he kept still and squeezing that Michaelangelo and soon it was done. He was worried that it would bleed afterwards.

I was talking with Nick about something afterwards when he isn't feeling well. He gives me a look and says "Why won't I be feeling well?" Oh, um because the surgery will make him feel yucky for a while and then he'll start feeling better.
I just want to surgery to be done so then we can start on the healing and feeling better part.

On the weekend when we were up at the cottage and in the lake, it hit me that Nick probably can't go in the water for the rest of the summer. He has been loving the water at the lake so much. But it is only half of one summer. In the grand scheme of things it will work out.

There isn't all that much to do to prepare right now. I have papers that say someone will call, and if you haven't heard a week before surgery to call them. So it is just waiting.
We have the date (July 28th) but no time.

Now I'm just paranoid that someone will get sick! So everyone knows to use our handsanitizer all day.

Also, now that we are so close to having the poop part of it sorted out. Nick has been leaking pee. Not quite sure what that is about. I asked about it in my SB group and the first recommendation was the mitronoff surgery (the one they suggested we do with the MACE). But we went through all of the options before considering surgery for Nick and I am not ready to make that decision in 21 days.
We will at least have a consistent urologist for about a year or so, so after the MACE we can work on the peeing stuff (I'm thinking botox might be in our future) but for now 21 days until surgery.

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