Jason's Journey, April 2014

Jason's Journey

It is now May 2nd, but I will go back a ways.  If you look at my last post, you might be wondering, "where did that come from and what's it supposed to mean?"

Well, let me explain.

In the beginning of April Jason had about 25 seizures in one week.  This scared us quite a lot.

What was going on?

Jason was drooling.

Jase was off balance.

He was unable to speak and it seemed like he couldn't 'come out' of the seizures during the day.

He walked with his head down, a sweaty sheen on his face and large pupils.

Jason just paced and paced.  He couldn't stop walking.  It was a fast desperate walk like he was trying to get outside of his own body.

We felt so bad.

As we have so often experienced before, we felt helpless to help our child.

I emailed Jason's neurologist, Dr. Bello-Espinosa.

He replied with a rather scary email.

"This is urgent, life threatening, critical and needs immediate attention. Jason needs a Corpus Callosotomy!"

We were able to stop the seizures with a rescue med which relieved the urgency of the situation. 

The CC was something we had been trying to avoid for a few years.

We knew we had come to the point where we had very little options left for our Jase.  

Actually, this was the only option left that would be considered.

This week Wednesday, we had an appointment with Dr. Hader, the neurosurgeon. 

We had heavy hearts going in because we knew what was coming.

However, true to Pronk form, we had a few good laughs on the way there.

Let me explain. 

Oh what a story!

Come with me on our ride to Calgary.

We left home at about 8:30 a.m. and drove to Butte to fuel up.

Case bought Jason a slurpee there.

Anyone who knows Jase, knows he loves slurpees.

He looked at Case, grinned and said, "Thank-you Daddy"

Uneventful trip so far.

Somewhere around Stavely, Jase says, "Do you have to go basoom?"

I said, "Case, we need to stop at the next gas station to take him to the bathroom."

"Basoom" Jase said.

We drove for a bit and I hear from the back, "Do you have to pee?  Mommy, you have to go pee!"

I asked Case, "Did you bring extra clothes along?|

He said, "No, did you?"

Haha, why would I ask if I brought them along???

All of a sudden Case pulls over onto a side road and stops.

I asked him, "What are you doing?"

Well, Jase said he has to pee so I'm taking him.

Oh.

You've got to understand we've been doing this for years.

It has been no big deal.

Case would lean over Jason and help him undo his pants, keep an eye on him so he didn't pee all over the front of his jeans, zip him back up and go back to the car.

When Jase has to go he has to go now!!!

There's just one wee problem these days.

Jase is almost as tall as Case is.

This is what I saw watching out the window.

I almost had to get out to pee too!!!

Two grown men standing beside each other.

One man had his shorts down at his ankles and his boxers hanging down his butt cheeks.  He was looking down at himself and doing his business.

The other man was standing beside the first man, he had his arm around his back also looking down at the business that was going on.

Now, I know that the first man is handicapped and doesn't understand that pants don't need to go all the way down to the ground especially when you're right beside the highway.

I also know that the second man is the first man's Dad and the only reason he's looking at the business that's going on is so he can tell the first man to lean forward so that he doesn't get pee all over his shorts.

I also know that the only reason the second man has his arm on the first man's back is to make sure he doesn't turn around and run onto the highway, and to help push him forward so he gets the right 'lean' on the operation.

 It's a safety issue, nothing else!!

However, do you think that anyone driving by would have thought like I did?

Not one person honked!

I think they were all in shock over what they were seeing.

Not here in Alberta!

Just openly standing on the side of the highway!!

Two men!!

Look at the picture and judge for yourselves.

And don't pee your pants laughing!!

I almost did!

Well, we arrived at the hospital with no more issued and waited patiently for the Doc.  It only took a few minutes for Jase to find the computer.  He tried to log on to the internet but needless to say, we discouraged that.

Now for the details of the visit.

I will copy/paste what I wrote to family and friends.  

We would like to thank all of you for  your thoughts and prayers.  We know how much you care for us and our family and we are very thankful for that.

Yesterday we met with Jason's neuro-surgeon. Together we came to the conclusion that a complete corpus callosotomy would be the best option for Jase. The Corpus Callosum is the connector between the two halves of the brain.  Dr. Hader will go in through the top of Jason's head and separate these two halves completely. This surgery will not cure Jason from his seizures. It is a palliative care procedure that will hopefully keep the seizures from spreading from one half of the brain to the other. We are also hoping that the number of seizures will be reduced and the severity of each one would be lessened. Pray that we would have peace with this decision. Pray also for

1. Dr. Hader and surgical team. Jason will need to be under general anesthetic for the MRI at the start and then will be taken right away into the operating room.  The surgery takes about 5-6 hours. 

2. Jason, even though we think he doesn't know what we're talking about we know there is more gong on in that head than we realize.  Pray for calmness as he has such a hard time before going in to surgery. Pray that after surgery he would be able to be calm.  It is incredibly difficult to keep his hands away from his I.V. and surgical site.  They will give him a central line and also staple the bandage to his scalp to help with this challenge.

3.Pray for us as we take care of him afterwards.We will need eyes on him every single minute. We literally can not take our eyes off of him unless he is sleeping.

4. That a room at the Ronald McDonald House would be available for us during this time.  They are very busy and usually full which means we have to find a motel close by.  The Ronald McDonald House is within walking distance which makes it so much easier for spelling each other off for breaks etc.

5. Pray for the girls and Ryan as they also struggle with Jason's seizures. Pray especially for Amy as she is so far away and will not be able to be with us for this part of Jason's journey. They all love their brother so much  and need peace in this situation also.

We serve a God who is with us at all times. Even though we do not understand His ways, we know that His name will be glorified through this also.

Thank you all for your prayers,

Case and Wilma

I will be posting on this blog as we move on through this journey.

We do not know what the future holds, but we know Who holds the future.