My 12 year old had a severe AVM episode

Welcome & Help New Member Introductions
1

46 days ago my son Coop was at camp in Chattanooga, Tennessee.

He did not feel well and he decided to go to the nurses station. His stomach and head hurt. Coops became short of breath and he then asked the nurse for a hug and he collapsed in the nurses arms.

4 of the 7 nurses on duty that first day registering all the kids at camp m had actual trauma room experience under their belts. This real world CPR experience from those 4 nurses saved our sons life from a ruptured AVM in his head at the base of his brain.

Our son was rushed to the hospital, put on a ventilator and he underwent emergency brain surgery removing a portion of the rear skull of his head to release the blood pressure in his brain.

He was given a 10-15 percent chance of living that first day. He had a damaged heart, he aspirated into his lungs, his blood gases were that of an expired person etc etc. He was in really bad shape

Over the next 30 days living at the hospital we watched our little Coops heal his heart, clear his lungs and stabilize the rest of his body enough to be medically transported back home to California.

Chattanooga Tn people are some of the best people we have ever met in our lives. The PICU nursing staff, doctors and yes even the very, very smart neurologists and surgeons were absolutely extraordinary in the care of our son, Coops

We moved our son to UCSF Banioff because they have the best reputation on the west coast for children with AVMs

After 46 days our son is now beginning to move his head quite a bit, he opens his eyes from time to time, he moves his fingers and feet from time to time and it seems as though he is beginning to respond to our voices.

Today he comes off his tube ventilator and he goes onto a trach. This way he can begin more aggressive rehab.

We have come so far over the last 46 days yes however it doesn’t even feel like we have reached the starting blocks.

Will he come off a vent. Will he wake up. The MRI’s are daunting. His frontal lobe is all in tact and they’re definitely brain a significant stem damage
The nurses say don’t pay attention to MRI’s because they have seen worse ones where kids completely recover (over a long period of time) and they have seen MRI’s that are not so bad where kids do not recover. “They are kids and you just never know” is what they all said

Obviously anyone on this website understands how absolutely daunting this unknown path is.

We talk to Coops, we sing to Coops, we touch Coops and love on him as much as possible.

We have a second son and we do not live in San Francisco so mother and father decided to split the family with mom sleeping in SF and Dad at home with our oldest son in Southern California. Dad visits every week and son visits every other week to SF

Not easy at all to be splitting time.

Any words of wisdom or words that can help us see the light in this sometimes very dark world would be very much appreciated.

Thank you all and bless you all.

MM

9 Likes
2

My heart is with you and your family. I was the one in my house with the AVM, my kids were 11 and 13 at the time and I remember looking at them and being so thankful it was me. The thing about younger people is their healing ability and resilience is amazing. It sounds like you are doing everything right for your son, and he knows you are there for him and that makes a huge difference. Take Care, John.

4 Likes
3

Bless you too! I am so very sorry your son is living through this … thank God he had nurses attending him at camp and their preparedness saved his life. Not sure what you’ve done if it happened at home as it happened to us. We didn’t know what to do or what was going on with our son as he had an AVM induced seizure. My son’s didn’t rupture. He went through Embolization, failed Craniotomy and Gamma Knife in 2024. We will be praying for your son every night. Please let us know how he’s doing. I don’t know if you’ve seen or heard of the movie called 1000 to 1: The Cory Weissman Story (An AVM specific survival story). We saw it as my son recovered but he never saw. It will give you the story of Cory that did go through a ruptured AVM. Blessings and prayers for you and your family as you live through what I am sure feels like a nightmare.

3 Likes
4

Just want to let you know that you’re doing the very best for your son by being with him! He knows you’re with him, and he feels the love. Although I don’t remember being in a coma after my bleed (at age 10), I was told that I reacted to the people/sounds in the hospital room with me. For example, I was agitated when my aunt visited me (she and I weren’t speaking at the time). On the other hand, my mom played my Harry Potter CD for me and I know that somewhere in my mind I could hear it and it brought me comfort. Sending you hugs and strength!

All the best… Julia

1 Like
5

My son (10 at the time, now 11) had an AVM rupture in January and had his AVM removed in late March. I just wanted to reach out and say how truly sorry I am that your family is going through this. It really is a nightmare scenario. But please know that my family is sending all of our thoughts and strength your way during this incredibly difficult time. I hope it helps to you to know that you are not alone. Even though our situation was a little different (no loss of consciousness but experienced left hemiparesis), if there is anything I can share about our experience that would be helpful to you, don’t hesitate to reach out.

I hope the trach removal went well and that he continues to improve.

2 Likes
6

Hello, I am a spinal AVM survivor so it is not the same as your sons but I still hoe it can provide you some words of comfort. My AVM ruptured when I was nine years old, hot completely paralysed from the chest down. Was unable to sit by myself or move anything below my chest. Within six months I was sitting by myself and walking with assistance. I am 24 years old now. I never recovered fully, and I use a wheelchair but I am able to do most if not all things for myself. I have days when things are tough and days that are great. My life changed a lot but one thing personally I am grateful for is that when my AVM ruptured. I have been now disabled more years than I have been “normal”. This is my life now and I don’t really miss what I barely remember. I hope that your son can recover, you sound like lovely supportive parent and that will help him a lot on his recovery journey. Kids are resilient and they can heal, from my personal experience. But mentally and emotionally from personal experience it is easier for kids to deal with new life altering circumstances. I wish you and your family all the love and strength through these difficult times.

1 Like
7

I’m so sorry to see another family is going through this horrible experience. So far the circumstances of your son’s AVM rupture and first few weeks following it are chillingly similar. She was nearly 10 and would have died at the scene if she hadn’t received lifesaving care immediately. She also needed a trach and a feeding tube in her stomach. We are several years out from the experience however as it happened in January 2017. I’d be happy to provide more of our story if you’d like. I think you can send me a private message or you can just respond to this post.

2 Likes
8

No wisdom to offer here, just best wishes for your son’s recovery, and for the family. From my own discussions with neurosurgeons it does seem that bad looking scans can have good outcomes and vice versa. You’re definitely at the start of a long journey but as others have said kids can heal remarkably, so being young when this happened may give him the best chance of maximal recovery. Wishing you all good things :crossed_fingers: :heart:

3 Likes
9

I am so sorry that your family is experiencing this. Kids are truly amazing in their ability to heal and recover. We have not experienced a ruptured AVM but your son is the same age as mine and my heart and thoughts are with you and your family. This group has so much to offer in the way of support and love. We will be thinking of you all and praying for strength, healing and comfort :heart:

2 Likes
10

Hi Allie.

I cannot remember if I sent you a text previously. Yes I would love to hear your story about your daughter’s AVM. My son is at month two today.

3 weeks to save his life in PICU.

We are transferring him to Radys Children’s Hospital in San Diego.

He is still in a vent and in a vegetative state however he has begun to open his eyes, move his head a lot and he moves his hands and shoulders at times as well.

My wife says that he responded to two commands however I have not see that.
The hospital that we are going to had a rehab program for kids on vents.

UCSF does not that’s why we are moving.

I am so scared of my son not waking up or coming off of a vent. He has come so far already as they gave him a 10-15 percent chance of living the first two nights.

Any hope or guidance would be a godsend.

We have another son who’s 15 so I stay in Newport Beach Ca while my wife has been staying in San Francisco. I have been commuting with our 15 year old every 10 days. It’s brutal.

At least Cooper will now be in San Diego (Radys) which will be a lot easier for the family and friends to commute to.

Thanks so much for reaching out

3 Likes
11

Getting him closer will definitely help you and that’s a big thing, too.

I think the one thing I’d like to add is that recovery from a stroke takes a lot longer than anything else we know, so possibly the most important thing you can do is to make sure that you are living your life in a way that is sustainable. We all understand the desire to be there as much as possible, we all understand the desire to prioritise your son but in the same way that on an aeroplane, they tell you to put your own oxygen mask on before helping others, it is important that you live, eat, sleep, rest in a way that ensures that you can continue to support Coops and yourself and the rest of your family over the long term. It’s not the natural thing, it’s not what you want to do but honestly when it comes to the longer game, this is how you need to play it.

Please make sure that you don’t overdo it.

Lots of love,

Richard

2 Likes
12

Thinking of you guys and sending hugs :purple_heart: Hoping Coop was moved closer to home and you are seeing some improvements. :purple_heart:

You may want to check out the AVM alliance for their resources. They have a number of supports that might be helpful to you.

1 Like