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!

Tuesday, May 20, 2014

Surgery Date

After two weeks (felt like forever) of waiting for a date I got the call. For the MACE surgery

We had wanted August. Nick has 3 weeks of camp in July that I didn't want to have to cancel, and then the cottage for our family reunion for the long weekend, and I have vacation time in August...
So August was when we were hoping.

I called the Nurse Practitioner as soon as I got home May 2nd (after hours of course), then called again on the Monday and talked with her. She said they were booking into the summer but someone else would have to call me back with the date.
I had a little bit of a freak out.

Fall means missing school, and at least another 4-6 months. I'm not sure I can do this for another 4-6 months. Accidents and inconsistency, not coming any closer to underwear. 60-90 minutes every night or evening and then still having issues the next day. And the waiting, knowing we were just waiting to start something that make take a while to work.

We made the decision and now I just wanted to do it!
Get it done and on the road to the tough recovery.

Last week I got the call.

July 28th

My first thought was that we couldn't do it. It was too early (yeah that thought actually went through my head... after worrying about it being in November).
But no. July 28th is good. It is great!

Number one is that it is a special day by itself. Nick's grandpa's birthday, and keeps them connected.
But it is also immediately after camp is done, with a good 6 weeks of recovery before school. It will cut Nick's summer in half, but the first half is full of fun.

Now it is just getting the time off of work to be with him.
As soon as I found it I contacted everyone to see what my options are. Taking a leave of absence for 10 days is my plan. Let's me be with Nick in the hospital, and extra time in case of complications (I haven't heard of anyone who had the MACE without some kind of complication, so I'm expecting something). And time at home for recovery as well.

So July 28th is the day.
68 days away.

We've talked to Nick about it.
He has been asking when we will put the catheter into his belly button.
We've talked about an operation and going to sleep.
Not sure what else I can do to prepare Nickolas. But we have 68 days to figure it out.

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