Saturday, August 22, 2015

Monday is the Day

First of all I wanted to give a HUGE thank you to all the love and support we received throughout last week.  It was a huge sigh of relief this past week when I got the news that my MRI looked good and my tumor was stable.  It was probably an even bigger sigh of relief that Owen was so brave during his MRI this past Thursday.  One of my biggest concerns has been how Jamie and I will be able to stay strong and positive for Owen on Monday morning.  We KNOW what is going on and how serious this all is but we don't want to let Owen know we are nervous.  Seeing him be so brave at his last MRI gave me the boost I needed.  It just reminded me yet again of how amazing Owen is.  How his strength and adorable attitude will get us through this all.  It's not going to be a fun stay but we are praying it will lead to an easier life for Owen in the long run. 

I know we will have lots of people praying for him and thinking about him.  Wanted to get a post up that kind of outlined what this will all look like.  Our ultimate goal is to locate the exact spot Owen's seizures are coming from and to remove that portion of his brain.  That is what we are praying so very hard for. They have a general idea.... but you need to be VERY exact so you take out the smallest amount of brain possible.  We do know it's coming from the area on the left side of his brain that was damaged from his stroke/grade IV brain bleed in the NICU.  Now we need to dig further to pinpoint the spot and figure out if that area of the brain is being used for any of Owen's daily life. 

So here is the plan
We will check into Children's Hospital around 7:30am on Monday morning (i feel literally sick to my stomach this is a day and a half away).  There will be about an hour and a half of getting checked in, talking with everyone and Owen should be heading back to OR around 9am.  They will give him some gas to put him to sleep once he is taken from us and he will be totally asleep for the entire procedure. 

 They will first start a PICC line, which take about an hour.  This is basically a long term IV he will have in for the duration of his stay.  Once that is placed, the neurosurgeon will come in and begin the first surgery.  They will be drilling tiny holes into Owen's head and then inserting tiny wires with electrodes deep into his brain.  The placement has to be exact, he will actually have a metal cage screwed onto his head that will help guide the surgeoun in his placements.  It's a long process.  We were told Owen would head back to OR around 9am and it would be 6-8 hours until he was in ICU.  

Once the electrodes are placed, he will be taken for a quick 2 minute cat scan to make sure everything looks right.  From the cat scan he will be taken to ICU.  When he is stable, Jamie and I can finally see him.  We will spend the night with him in ICU, he will most likely be sleeping most of the time and nurses will obviously be in often to check on him.  His head will be wrapped up just like with a normal EEG and they have said their should not be any severe pain for him.  

At 9am on Tuesday morning the poor guy will be sedated again for an MRI.  This MRI will check to make sure everything looks good and there are no complications, bleeds, fluid, etc.  If everything looks as expected he will be taken up to the 7th floor EMU (epilepsy monitoring unit).  Over the course of the next few days we will wean his medicine and sleep deprive him to induce a seizure.  This could take 2 days, it could take a week.  There is no way to know when the seizure will come.  I have a feeling it may take awhile as he will have had so much sedation between Monday and Tuesday.  The closer we get to him having the seizure, the worse it will get.  Owen will be out of sorts from not having his medicine, he will be tired, you don't feel like yourself.  He will to be able to leave his bed at all, not even to go to the bathroom.  Not sure how that whole process will go over.  Once he has the seizure, there are basically three outcomes that could happen. 

1.  We see the seizures are coming from a part of his brain that we can NOT remove because it would greatly affect his quality of life.  He could lose his ability to speak, understand what people are saying, lose complete use of his right hand.  We REALLY hope this is not the outcome.  If it is, they remove the electrodes and we head home and continue doing what we are doing and try out new meds in hopes of helping him. 

2.  They may see the seizure and decide they still need to collect MORE data and more information.  If that is the case, Owen will go back to the OR where they will remove portions of his skull so they are able to put a mesh grid directly on the surface of his brain.  This will capture additional data as to where the seizures are coming from.  Once the grid is in place, they will wrap his head back up and we will go back to EMU and wait for another seizure.  Once they have all info from that, they will do the mapping (explained below) and if we decide to move forward.... he would go in for the resectioning surgery where they would remove the part or parts of his brain that are causing the seizure.

3.  The third thing, what we really want to happen... is that they capture ALL the information they need from his FIRST surgery with the deep electrodes.  If they are able to get all the info they need from that first seizure they will map his brain the following day.  Mapping is a process where they basically hook Owen's wires from his brain up to a little box and the doctors stimulate different parts of the brain.  One area may cause Owen to move his right hand or his leg.  They will test the areas and mark down what areas are serving what function.  They will already know the area of his brain they want to remove and this will hopefully allow them to see if that part of his brain is being used for any important functions.  The problem is you can't really map speech and language which is what we are most scared of being affected.  They are pretty sure it's near that area.  So many parts of the brain are responsible for speech and language you can't pin point it to one area.  Plus with the brain damage Owen has, his speech may be in a totally different place than it would normally be.  

So most likely we will be deciding whether or not we want to go ahead with the second surgery knowing that his speech and language MAY be affected.  It could be affected a tiny bit and it could be affected A LOT.  We are praying big time that it ends up being somewhere FAR AWAY from speech and language.  

If we decide to move ahead he will then be taken back probably the day after the mapping is done to have that portion of his brain taken out.  

Jamie and I are a huge ball of emotions.  Scared shitless, hopeful, sad Owen has to go through this, happy that this could really work for him, nervous for how Owen will take all this, thankful all the love and support we have.  

I hope this made sense.  I know a lot of people have been asking what exactly the procedure is.  Hopefully this makes sense and wasn't too detailed.  Words could never describe we have for Owen.  He is just SO happy and SO perfect and to think he is this amazing with all he has going on in his head.  

I have a huge fear this surgery is going to change Owen's personality.  Aside from any serious complications, my biggest fear is that he is going to come out of this a different kid.  He's beyond perfect the way he is.  Innocent, determined, kind, compassionate, silly, happy, resilient, confident, motivated, loving.... he's just Owen.  I can deal with set backs and having to really work to get his speech back to baseline but I just want Owen to be Owen.  The kid that only wants Mom to rub his butt each night at bed, the kid that insists on carrying the groceries into the house, the kid that loves to help dad grill, the kid that always has a smile on his face.   I just want to make sure that Owen stays the same.

I know he is NOT going to like this hospital stay.  It's so hard as he gets older and understands more.  The other day he tearfully asked why he has to wear braces on his legs and Jacob doesn't.  He is going to be really unhappy that his head will be shaved, I am guessing we may need to cover the mirrors at our house until it fills in a bit.  He will be stir crazy and antsy after a few days of not being able to leave a hospital bed.  Jamie and I will be running on fumes but we will get through this.  I know we will.

So please pray for Owen's doctors and nurses, please pray for Jamie and I to have the strength to get through this and most importantly pray for Owen.   

I will be updating via Facebook during our stay.  I will try to get a blog up every few days if time allows.  Thank you in advance for all the prayers. 

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