April 28, 2012

Set back...

Hi all...

Last night was a bad one for Gage. He had over 100 seizures and no amount of medication was stopping them. The Dr.'s put him under and intubated him...he will more than likely stay this way through the weekend.

The Dr.'s are lost. No one has any idea why this is happening. None of them have ever seen this before...Gage is that rare according to one of the Dr.'s.
This does not make us feel good.

Gage's neurosurgeon is more than likely going to present all of this to the surgical board on Tuesday...more surgery is a very good possibility right now. He is almost sure that judging by how all of this is going that he is going to need the left half completely removed...not just disconnected. There is also a possibility that nothing is going to help.

We have no idea. The Dr.'s are throwing ideas out there but everyone is completely baffled.

We just don't know right now.

April 27, 2012

Surgery update...

Hi all...

Gage is still in PICU. Things are not going as we had hoped. Gage is still having seizures and they are the seizures that this surgery was supposed to stop...the tonic seizures involving his right side (left part of the brain controls the right side and the left half is the half that was disconnected). The Dr.'s have not figured out why this is happening so they are currently treating the symptoms by adding more medication and trying to figure out the cause. He had an MRI late this morning so hopefully the results will help them figure this out.

So far Gage has not woken up entirely. He is on a ton of medications and it's keeping him very sedated. He has a ton of tubes and lines in so it's better to keep him calm for now. Once he leaves PICU they should be able to take out some of the tubes and hopefully then he will be able to safely wake up completely.

...what else...he has been running a fever on and off since last night...it's gotten pretty high a few times. He is also on supplemental oxygen because he is so sedated that it was affecting his O2 levels. His blood pressure has been a little chaotic at times as well.

Right now our baby boy is a bit of a mess and could use all the thoughts and prayers you can send. I am home for the night with Ellie but will update after I talk to Kris.

Love Love Love

April 26, 2012


The surgery went well. Gage is doing good so far...he has a million and one tubes in right now...including a drain in his head. The staff in PICU are keeping him comfortable. Tomorrow he will have an MRI done to make sure everything looks good...I will update after that. Sorry this is so brief but I am exhausted. Good night! Love Love Love

April 24, 2012

Checking in...

About 2 months or so ago Gage went into the hospital to have some EEG monitoring done and during the week he was there his seizures went crazy...he had so many that my husband lost count. It was apparent that the corpus callosotomy that he'd had done last year was not doing what we had hoped and in fact his seizures were worsening. His neurologist tried a few different medications while he was inpatient but none were doing enough...they would help a bit but never enough. The Dr. released him and ordered a PET scan to be done the following week on an outpatient basis. Waiting for those results was hard...his Dr. was hoping Gage would once again be a surgical candidate but it was all dependent on what the scan showed. In a few days we had our answer...there was a "spot" on the left side of his brain and the Dr. was certain that he would be a surgical candidate but we still had to wait for the board to convene to find out for sure. More waiting. It took about 2 weeks to hear back but the news was good...Gage was a definite candidate for surgery and in fact there was more than one option. Kris and I were happy but sad as well...no one wants to see their child have a surgery of any sort...even if it could help. We met with his neurosurgeon about a month ago and our options were quickly narrowed down to just one...the hemispherectomy. This surgery won't "cure" Gage of seizures but it will lessen the amount he does have. Currently his seizures are on both sides of his brain with the left side causing about 90% and the right side about 10%...obviously the left side is the side that is going to be 'disconnected.' Surgery is going to take place this Thursday afternoon. I am opening this back up so I have a generalized place to update people. I don't like to do much updating via Facebook as it just doesn't seem like the right forum for it...so this is where I will do it. Please keep all of us...especially Gage in your thoughts and prayers.