Some thoughts...

Wow. It's been a long time since I've updated Gage's blog. And that's not because there isn't much to update on...the opposite in fact...a lot has gone on or changed with him but I tend to think that if you have the link to this blog then you know what's going on day to day with him and I save the updating for hospital visits or big clinic appointments.

That's not what this post is about. This post is about something that's been weighing heavy on my mind for sometime now.

Being a parent to any child is hard. Being a parent to a child like Gage is extraordinarily hard. Typically at the end of each day...I'm tired. If not physically...then mentally. Usually I just want to curl up in sweats and watch some mindless tv or read some stupid stuff online or on the worst days...try to sleep.
I don't go out often. Kris and I almost never go out as a couple. I don't even remember our last date night. But this isn't a complaint. It's just reality.
What's hard is when little by little people stop calling. Sure...I almost always say that I can't hang out but who knows...maybe somewhere there's that one time I can.
What's hard is feeling alone. Seeing my circle of friends grow smaller and smaller and smaller. Very few people check in to see how Gage is doing anymore...that's family and friends. And that's hard to swallow.
It hard to see pictures of friends or updates and know that they are moving on without you. Can't really blame them. You're not dead. But you're not really there anymore either.

I don't know where I really fit in these days.
I wish I could do a lot of things. I wish I could change a lot of things.

This is my life though.

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.

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

Surgery...

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

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.

Update #2...

Gage's fever is back. This is what could potentially keep him from coming home. The nurse gave him some tylenol so now we just wait to see if it's going to work.

He also lost his last IV...it infiltrated and caused his hand and arm to swell up quite a bit. His Neurologist ( Dr. Z) had happened to stop by and she had wanted to call up transport to get another line going but thankfully the nurse was able to talk her out of it and it was agreed that if he needs rescue meds then it will be given in another way.
Starting IV's and drawing blood is really traumatic for him.

Other then the fever and the IV everything is going well. I guess now we just wait and see.
Wait wait wait.

Update...finally...

I apologize for the delay in this.

Gage's surgery on Thursday went well. It took a bit longer then they first thought because the Anesthesiologist was having a hard time getting the lines in. Once they finally did things went very well. The hospital was pretty good about keeping us informed which was great...sitting in a waiting room and not knowing what is going on with your child is soo hard.

There were some interesting cats in the waiting room with us...I wanted to line a few of them up and do a quick smack down.

Anyhow...once Gage was transferred up to ICU things got a bit hairy for a short time. Kris and I explained to every single person we saw that morning that it was important to stay ahead of the pain control. Gage has a HIGH pain tolerance...it's ridiculous how high it is...once he's in pain though it's almost impossible to get it under control.
We told this to every nurse we saw, the Neuro. surgeon, both Anesthesiologists...EVERYONE. Did anyone listen??
Nope.
We got up to the room and poor Gage was a wreck.
He had so many tubes and a drain in his head and he was hurting and confused and SO upset. It broke my heart and really upset us that no one listened to us.
It took 2 doses of Morphine to get him calm.
I felt bad for the ICU nurse as it was not her fault at all and she had to deal with two very angry parents...she was amazing about it though. Very patient and understanding and went right to work figuring out how best to get him calm again.
Thanks Monica!!

Gage had a CT scan later that afternoon to make sure there was no fluid on the brain and aside from the craziness of getting him hooked and unhooked from all of the tubes it went well. The scan was clear.

Gage was pretty agitated the first night but they gave him a medication that helped calm him down. Kris stayed with him and I went home to be with Ellie.

The agitation stayed with him for all of the second day. Kris apparently spent the day by his bed trying to keep him from pulling out the lines.
Kris had another great nurse...this time a friend of my brother's. Hi Ginna!
He said she did really well and stayed on top of things with Gage. We really appreciate that.
Gage had an MRI done that day to make sure the Corpus Callosotomy was complete...it is :)

Around 10pm the second night Gage was transferred out of ICU and onto EMU. This was both good and bad...it was good that he was doing so well that he was able to be transferred but bad because the awesome care was gone and he was no longer able to get the medication for his agitation (it's only given on the ICU because the patient needs to be monitored so closely).

The 3rd day things got a bit hectic. Gage started to run a pretty good fever and was also an itchy mess from all of the morphine. Benadryl and tylenol were started and he was pulled off the morphine. By this point his pain was pretty well controlled with IV Ibuprofen.
The fever has been up and down but is hovering right around 99.1-99.5. His Neurologist isn't too concerned. She threw around some big, scary words as for the cause of it but isn't worried. Kris and I are just making sure the tylenol is given regularly.
This has been a little bit difficult as weekend nursing on EMU is a bit...lacking. They've been very nice but a bit...complacent.
We've got it handled though.

I think that's where we are now. Kris went home to be with Ellie last night and I've been here.
That's been one of the hardest parts of this...we both feel so torn. BOTH kids need us and we want to be with BOTH of them.
We're getting through ok though...we've got lots of help :)

I apologize if this update is a bit all over the place...I am very tired right now.

ETA: UPDATE...His temperature is finally normal!!!!!