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AVM Survivors Network

Tracheastomy and ventilator while my child is in a coma from an AVM rupture in the cerebellum

#1

Hello,

My son has been in a come for almost a month now. He is on a ventilator and now needs a tracheostomy. My son had an AVM in his cerebellum and it ruptured. The bleed caused damage to his brain stem and thalamus. The doctors really dont give us any hope but we refuse to give up on our son. He is only 11 years old. Our hearts are broken and we are so confused as what to do. I know i could never live with the fact of knowing i played God and ended my own childs life. Even the thuoght makes me wanna throw up. So we have deciced to go the other route to give him time. Has anyone here been in a similar situation? I dont really know what to expect. I know he will be in some pain after the surgery. I just want the best for him. Has anyone had their child on a ventilator for a long time? If you have any helpful information for us please help. Please pray for our son. and follow his facebook if possible. Roy Vasquez Jr. Thankyou

#2

I will pray. That is all I can do. I am the one with the AVM. There is a group on here that is for parents. Perhaps you might check on that for answers. I have an 11 year old and an 8 year old. I thank God everyday that it is me and not them.

#3

We're praying for Roy, Silvia.

#4

My heart breaks for you Silvia. I too will pray.

#5

PRAYERS!

#6

I was in a similar situation but i dont think i had a ventilator. My heart goes out to you. It's in His hands now

#7

I am so sorry :( I cant imagine having to "play God" with my own child's life. I think God wants you to listen to your heart... and there is always hope where there is still life. God bless you. I will follow your son page.

#8

Hi Silvia - I was both intubated in emergency and then trached, so I’m living proof that all things are possible, when that’s what’s meant to be.



We might have a difference of opinion on “playing God”, and I think that you should go easier on yourself - you’re doing the best that you can; and the ultimate decision is up to a much greater being.



As was already mentioned, be sure to check out the parents’ sub-group for that perspective, too.



I’m sending good vibes your way to comfort you, your son, and all involved - now and for all of the challenges to come.

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#9

Bless your family! We are going to pray for you and know that our hearts are with you!

#10

You, your son and your whole family are in my thoughts and prayers! We are all there with you, please know that!

#11

I will pray. I had an AVM bleed on the cerebellum. It was bad, but nothing like what occurred to your son. It is very sad that this happened. I will pray for you, also. Being a parent of a child in this situation must be agony.

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#12

Hi, Silvia - Mine ruptured in the cerebellum, near the brain stem in April 2011 (I was 30) . My AVM was removed in its entirety via emergency craniotomy. Sadly, a large portion of the cerebellum had to be removed, too - so yeah, there's damage, but I was unaware of how much for a long time, so it doesn't really matter anymore. I was asleep for over a month but I was not in a coma, and they decided not to put me in a medically induced coma so I would wake up on my own. However, I did "respond" (i.e. to pinching) within the 72-hour time period my doctors said was important after the surgery. I was on life support initially and then as my breathing got better I got a tracheostomy. I also got a PEG (feeding tube in my tummy). My poor parents just waited next to my bed, not knowing when I would wake up. You mentioned pain in your post - I had no pain in my head when I woke up. Probably bc I was asleep for the worst of it. I did feel pain from lying in the bed at an angle for so long (I had to be on an incline bc of the food tube). Even when I was asleep my parents talked to me, told me what happened, read my favorite portions of the Bible to me, prayed with me, and even sang to me. And my family are not singers :). But when I woke up I was super confused so I was comforted by this bit of routine. I'm going to go find Roy's FB page now. HUGS.

PS. If you want to know more about what happened to me, go here: www.annninglearninghow.com

#13

I am so sorry you are going through this. I will be thinking of you and your son.

#14

Hello, my cousin who is extremely dear to me had an avm rupture the 5th of May. She is only 19. Previously in Mar 2015 she suffered a anuerysm which led to a stroke when doing the angiogram causing ataxia in her right side and quite a few other difficulties that she later overcame. She was almost there and had a very speedy recovery. Now she is in a moderate Coma. Her brain stem is primarily effected by the AVM rupture. There is a little bit of irreversible damage per MRI however doctors are optimistic. She is not really responsive to anything other than pain stimuli occasionally. Its been over a week since her surgery to remove the AVM was done. Who do I go to for help? We feel hopeless at times. She is on a ventilator and feeding tube… i feel we arent being well informed… did he wake up? And after how long…