“This place is the ultimate head game you map your move and then the air shifts and all the pieces fall down”
Aiden went for his seventh MRI today (I might have lost count) after having the drain put in on Monday the 19th. They have been monitoring the brain fluid pressure and draining when it reaches 20 or above. For the last 42 hours they have “clamped” the drain and the pressure seems good. We may not need shunt, may not need another surgery. Dr. NZ says he booked the OR for today just in case though.
As soon as I see Dr. NZ I know the MRI did not show what was hope for. So the surgery is a go and they take you right away. We walked down the hall as far as we are allowed the procedure has been explained to us and there really are no other options.
They will use the same hole as the current drain and make a C cut behind that ear the valve placed under the skin and a tube will go through the belly and connect. The fluid will drain into stomach when the pressure gets too high and be absorbed.
We ask about complications and yes but we are told this is a pretty common surgery and kids that I’ve had brain tumour removal so once again we sit here and wait.
My aunt and uncle come today with apple pie and Lynkon. I have not seen him in a week. He is no longer crawling just walking it feels like forever since I’ve seen him last. There is so much of a change. I am so happy he’s well taken care of but I miss him so much.
Just out of 3rd surgery here at Cheo. We now have a shunt put in that runs under his skin and drains into belly if fluid pressure get too high. It is hard to tell from photo but he is looking much “brighter” the swelling has gone down quite a bit, he has more control over eyes and face (made a grimace for pain!) and made a sound today! We still do not know what the pathologist will say but we have a strong boy who is fighting everyday!
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a donation to help with medical expenses and daily living expenses for our family. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but with that I have been unable to work and at this time have exhausted all funding sources. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)