A Munchkin Medical Update

I've been putting off writing this post for awhile. Many of you know already,but some don't that our wee little Munchkin is going to need some brain surgery to correct his seizure disorder since all of the drugs we've been giving him haven't been able to completely control the seizures. He had some testing done back in January that indicated that he would need to have the surgery. The surgery is going to be happening in just a few weeks in June. He's going to have what is called a functional hemispherectomy. If you are going to google it as I know some of you will, make sure you put the functional in front and ignore any articles about just hemispherectomy. That is a different surgical procedure and a really nasty one and you don't want to have happen to our Munchkin. Basically it means we are disassociating his right and left brain. All of his seizures are in the left side of the brain. And apparently over time the left brain can teach the right brain how to have seizures too and that would not be good at all. Also, in a large number of cases this surgery gets rid of the seizures completely. It's pretty scary stuff, but it should help him get better. They are predicting that he will get back to normal afterwards with therapy etc. He will at least temporarily lose the ground he's gained with his right arm, but they feel that he should do well. We don't know when the surgery is going to be, but we'll keep you updated. Our poor little guy has a long road ahead of him, but he's a little fighter and he's going to be just fine. Here's a link to some info about the surgery. Also we have apparently "The Guy" for our surgeon so that makes me feel a little better. Our little guy just loves scaring us to death. http://www.webmd.com/epilepsy/functional-hemispherectomy I've set up a "care page" with Sick Kids which I believe we can use for sending out notices and the like. If you would like to get updates just shoot me an meal and I can add you to the list.

Settled in the for the Night

We got to see Rob in the CCU tonight.  Again he's got all sorts of tubes and wires and things, but he's doing pretty well at the moment.  They are going to watch him closely for the next 48 hours, but so far so good!

I'm back at home now since there isn't much I can do for my wee man right now.  So I'm home to get some rest and see the cats.

Surgery all done

The surgery is all done and our Surgeon came out and told us all has gone well. So we are just waiting for him to be moved to the CCU so we can go see him.

The operation took from 2 to 6:30. Can't wait to see our we'd guy!

Phew

Location:Elm St,Toronto,Canada

Surgery is a Go!

Little Rob went in for surgery at 2 this afternoon. He should be in there for about 4 hours or so.

I wasn't sure he would be going today. But he did. Poor little guy was so miserable because we wouldn't let him have any food starting at 4 am.

It was interesting. We walked him to the OR from the ward. I picked him up and Bruce wheeled the oxygen.

He let the entire atrium know how hungry and unhappy he was.

So now all we can do is wait.


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Location:Sick Kids OR Waiting Room

An update after being away from the internet

It’s been a busy few days.    I haven’t been posting as much because posting from one’s iPhone is not the most convenient way of doing things when there is lots to type and there is no internet on the ward. And since I've been at the hospital with our little guy since Wednesday......

Last Thursday we were supposed to go for the surgery, but it got cancelled because the first surgery of the day went longer than they thought it would.  So we went back to waiting. 

Over Friday and Saturday, our wee guy was having a bunch of issues with the oxygen levels in his blood.  At one point they had him in an oxygen box to help out with it all.  They were actually at one point talking about putting a breathing tube back in to help out.  Thankfully they didn’t need to.  A blood transfusion on Sunday morning did the trick to make the levels stay in a good place.  The only way we had been able to keep him in the safe zone before that was to have me/someone else hold him.  But I was the preferred one .  So I was actually up for about 24 hours straight snuggling him. 

Now after the transfusion he’s good. 

And we’ve heard that our surgery is going to be either on Tuesday or if not, it will be on Wednesday. 

Here’s hoping it all happens tomorrow.  I would like to get the surgery done with so he can heal and come home.  

No surgery today

No surgery for wee Rob today. The first surgery went much longer than expected.

So we will be waiting to hear about the rescheduling.



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Location:Elizabeth St,Toronto,Canada

Surgery Date

Tomorrow is the big day. We have a surgery date of tomorrow afternoon provided the morning surgery doesn't go into overtime.


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Location:Walton St,Toronto,Canada

Surgery

Today we found out that the surgery to fix our wee man's heart is probably going to be the week of January 10th provided he keeps growing and doing well.  Hopefully this means he might be home at the end of January or the first bit of February.  That would be exciting.

Sick Kids Hospital

I must say, so far the Sick Kids Hospital team has been fantastic.  They have been  super reassuring and open to all of our questions and such.

Yesterday when we were there for the Echo Cardiogram, the nurse coordinator gave us a tour of all the areas we would need when we have to be there.

It was quite informative and reassuring.  I also like how they want you to spend as much time as is healthy with your child.  There are three "rooms" the wee one gets to be in while it's there.  The Critical Care Room, the Step Down Room and then a Private room.

In the first two rooms we can have pretty much 24 hour a day access.  We can't sleep there, but we can come and go as much as we want.  There are a few instances where we can't be in the room, but those are all procedure related is totally reasonable.

Then once Munchkin gets to the private room, which will be after surgery and a bit of recovery, we can stay as much as we want.  There is a bed in the room and a shower as well.  And they encourage you to spend as much time as possible with your little one.