My son AVM burst

June 6th my son woke up with a headache came down stairs to tell me then passed out while telling me he couldn’t feel his legs or control his balance. After being rushed to ER and discovering he had a bleed in his brain they drilled on the top of his head to release the pressure then flew him to another hospital where he was treated for liquid in his lung due to shunt being placed the wrong side and something like “liquid glue” was used to stop the bleed and surgery to remove the clot! Going on four weeks in PICU. He has dealt with high blood pressure, fever, a bacteria he developed from having breathing tube in for so long. All CT scans showed AVM was completely been removed, all blood was drained, and no damages! My son had started breathing over the machine and they were considering getting him off the ventilation but dealing with the fever, blood pressure and bacteria has delayed that and now they want to put in a trachea. It seems like everytime he has tried to wake up something happens and he is back under sedation… I am worried because all this time he is under sedation and shows some improvement but then back under sedation! Just wanted to know anyone who had been through somewhat same situation and what can I as his mom do or expect… Or I don’t know!! Just wish I could help him somehow!!!

Hi Jana and welcome. I strongly encourage you to join a sub-group here…
http://www.avmsurvivors.org/group/parentsofavm
Everyone there has a child with an AVM! You are no longer alone!!! There are over 3000 of us on this site!!!

You are in my prayers Jana.

The journey you are going through is horrible; I can understand your frustrations and desire to be back to normal.

Please have patience and be sure to have support for YOU. The worst thing in the world for your son is if you get so weak that you catch something. I hope you have a strong support group that can help you through this.

My best wishes to you both.
Ron, KS

Jana, You, your son and your family are in my prayers tonight. There are alot of people on this site that will be able to provide hope and words of comfort. We are all joined by the same thread (AVM) and how it has affected our lives. - Cindy

Jana,

I know that often, sedation is the best thing… it helps the body to heal.

I remember when my daughter was in the hospital and later in recovery, it seemed like forever. But, in reality it was just a couple of months. I hope that the same is true for you, that your son will begin to need sedation less and you will start to see him come back and that in a month or two you are moving forward positively.

Hay, sedation is a good thing when trying to get the brain to recover. I would like to suggest you befriend Tracey Ellis, she is from Australia but is going though something very similar with her son Brandon

My thoughts are with you all, I am sending healing energy
Stay strong and take care
DM

Jana,

You’re in the middle of the toughest time to have a child with a ruptured AVM. This wait feels like forever. We watch for any little thing and get very excited, only to be disappointed when it doesn’t happen the next day as well. The reality for us was that doctors and nurses rarely talked about recovery and damage because nobody really knows. Every brain injury is different (something you’ll hate to hear, but it’s true). I assure you that every recovery is different as well. Use this time to sit back and watch and let your support system distract you a bit.

What can you expect? For us, there were several infections, several weeks of sedation. We watched every twinge with hope. But the reality was that my daughter’s consciousness was being controlled by medication needed to protect her brain.

My daughter’s hemorrhage was a little over 2 years ago. She had a hemorrhage and massive bleed. She had to have a subsequent craniotomy to resect the residual AVM. She is scheduled for a third craniotomy in less than 1 month. But on the positive side, my daughter can run, walk, jump, skip, read, add, play games, and many other typical things for a 9-year-old. She does have some deficits, I won’t deny that. But few people would ever guess she spent 3 weeks in the hospital and another 4 weeks in inpatient rehab.

Right now, I can suggest you take things a day at a time. Rely on a support system. Things will move quickly once he wakes up. I am guessing you will be able to see his smile before long. Stay strong in the mean time.

Take care!!

  • Tina

Great words Tina!

Ron, KS

Jana, you and your son are in my prayers. I know how hard this is for you…I really think our parents group will really help you.

Thank you! I am trying to continue to be strong for him, for my husband and our two girls! Thank you for your prayers! I don’t know where we would be right now if it wasn’t for God giving me strength and guiding my son!

Ron, Kansas said:

You are in my prayers Jana.
The journey you are going through is horrible; I can understand your frustrations and desire to be back to normal.

Please have patience and be sure to have support for YOU. The worst thing in the world for your son is if you get so weak that you catch something. I hope you have a strong support group that can help you through this.

My best wishes to you both.
Ron, KS

Thank you for your prayers! They are what’s getting us through this tough time!

Cynthia Schaeffer(Grace’s Nana) said:

Jana, You, your son and your family are in my prayers tonight. There are alot of people on this site that will be able to provide hope and words of comfort. We are all joined by the same thread (AVM) and how it has affected our lives. - Cindy

Hi Jana,

Sedation can be a good thing for the brain to rest and heal, but i understand your frustration! our daughter was constanty sedated and it is heart breaking! Might i suggest you ask the drs what the chnaces are of him, having suffered a stroke! i know this sounds a little on the hectic side, but it might expalin a few things you have mentioned! I hope all goes well, and you will be in our paryers! lots of love and light! Jenny - p.s please keep us updated xxxx

Thank you!

Barbara H. said:

Hi Jana and welcome. I strongly encourage you to join a sub-group here… http://www.avmsurvivors.org/group/parentsofavm
Everyone there has a child with an AVM! You are no longer alone!!! There are over 3000 of us on this site!!!

Thank you all! This does take a toll on a parent… Specially during the days where he was laying on top of a cold blanket used to keep his fever down and I see him with goosebumps knowing that he hates to be cold and I as his mother can’t do anything to warm him up! Or the days he does look like he is waking up and starts being responsive so you get all of your hopes up like this is it… He is waking up and we are going home! Then something happens where he has to be sedated again and you realize where we are, what’s going on, and how we got here… Bleeding in the brain… Not just a cold and go home! My husband and I are taking turns here at the hospital because we also have two little girls. Trying to go home and keep things somewhat normal for their sake when my mind is always at the hospital with my son… I can’t stop hearing the beeps from the different machines. The “ding” “ding” “ding” that keeps me up at night! The “Mommy when is my brother coming home?” and all you want to say is tomorrow but it isn’t tomorrow is God willing soon!! The Doctors sound promising every time they come here… Leaves me wondering if they are just telling me that or is it really? And if it is why isn’t he up yet? Why when he opens his eyes it isn’t like he is looking at me or for me? He lifts his legs, he lifts his arms, he squeezed our hands, he tries to use his arms restraints to pull his upper body up… Yet he is sleeping and not knowing if he hears me, if he sees me… People telling me how strong I am when all I want to do is breakdown! Then I feel guilty because my son is te one dealing with all this stuff! I’m not the one laying there or who had brain surgery! Attached to a breathing machine! Having pain or fever or whatever else he is fighting!!! How dare I complain when all I have to do is be here, be patient, and Thank God my son is here and healing!! To think that it all started with “Mommy I have a headache!”

We are schedule to getting a trachea put in today and then winging him off of sedation to fully wake him then doctors say we will see his potentials. Scary, Excited, confused because CT scans shows no damages so why are we waiting for him to wake up in order to see his full potential? Trying to remain calm, patient, positive, don’t even know how to feel!! Thank you to all for your support! May God bless each and every single one of you and your families!!! I feel like everyone I talk to just don’t understand me, they just continue to ask for updates or when do I think we will be out of here, or what are the doctors saying, how long did the dr say you guys are going to be there… AHHHHHHHH I just want to scream and say he had brain surgery!!! His brain had blood that wasn’t supposed to be there pressuring everything which controls the body! It won’t take just two days and pick up your priscriptions then go home you’re healed!!! Although I am faithful and praying for a miracle for my son… Those asking me questions like I don’t have enough on my plate AHHHHHHHH (screaming frustration) I apologize for my ranting and venting!

Dear Jana, my thoughts are with you. I will pray for the complete recovery of your son. Lots of love.

Hi Jana. It’s okay to scream…rant and rave. We are here for support! I am praying for your son’s recovery!

You are in my prayers, Jana. There are many people on the AVM Network, including myself, that went through what your son is going through now, and we are alive and well! Keep the Faith!

Hi Jana,

I would encourage you to copy and paste the link below onto a paper, so that you can cut each link into a strip and carry them with you. Then when someone close asks “how’s he doing?” or “when do you get to go home?”, offer them a short version of where you are. Then hand them a slip with the link and say “It’s difficult for me to explain all of this in detail, but I update his condition regularly at this link and it will provide you many of the details. Thank you for caring.”

This link will take the person directly to your post. The person won’t need to log on, as they can read all the posts without registering. The won’t be able to respond without registering. But it might help folks understand if they read what’s happening, and it will keep you from having to go through all the details every time.

http://www.avmsurvivors.org/forum/topics/my-son-avm-burst

Hope this helps.
Ron, KS



Jana said:
We are schedule to getting a trachea put in today and then winging him off of sedation to fully wake him then doctors say we will see his potentials. Scary, Excited, confused because CT scans shows no damages so why are we waiting for him to wake up in order to see his full potential? Trying to remain calm, patient, positive, don't even know how to feel!! Thank you to all for your support! May God bless each and every single one of you and your families!!! I feel like everyone I talk to just don't understand me, they just continue to ask for updates or when do I think we will be out of here, or what are the doctors saying, how long did the dr say you guys are going to be there..... AHHHHHHHH I just want to scream and say he had brain surgery!!! His brain had blood that wasn't supposed to be there pressuring everything which controls the body! It won't take just two days and pick up your priscriptions then go home you're healed!!! Although I am faithful and praying for a miracle for my son.... Those asking me questions like I don't have enough on my plate AHHHHHHHH (screaming frustration) I apologize for my ranting and venting!

Hello Jana. I just wanted to let you know that I will include your son in my prayers. I know this is one of the most hardest parts but hang in there. As one of the PICU Doctor told me once hope Is the last thing you should lose and I believe it’s true. I have witnessed God’s healing hand and even though my daughter’s multiple avms are inoperable at this time I still hope and believe in miracles, because I believe in God. Just try to empty your heart to God, he is the only one that is 24/7 for us. And it looks like your son has pretty good odds. I mean if all the tests are normal, it’s probally the sedation he’s on that is avoiding him to wake up. My daughter woke up as soon as they took the sedation off. Well I will pray for your son and for strengh for you and your family. God bless you.