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AVM Survivors Network

Any info relating to 10 y/o boy w/rupture, still in ICU after 3 weeks


#1

Hi all,
My son had a rupture just over 3 weeks ago, and is now minimally responsive in the PICU. Anyone with a similar experience who might be able to,offer some insights or perspectives? Thanks in advance.
CD


#2

CD, what a harrowing time for you. Much improvement is possible, and we are rooting for your son that you begin to see improvements soon and that he makes a full recovery. Please keep us posted if there is any change. We have many parents who have been in your shoes, and I hope that some of them will respond soon.


#3

CD, my son was in ICU for just on a month. This is the most frightening, difficult thing to experience but keep strong. My son was also in a coma for basically three weeks and the last week started to become responsive. Be strong and keep believing. Having faith that he will recover from this is most important. Do not forget you are your son's advocate, cheerleader, go with your gut instinct. BE POSITIVE even if what you are hearing is negative. This is scary and there is many of us that has been through the same. My prayer's are with your little boy and his family. Keep us posted.


#4

Hang in there. I know this is a parents’ nightmare. My daughter was almost 7 when hers ruptured. She was in PICU for two weeks. For her, she slowly regained consciousness. Then recovery came quickly once rehab started. Your son’s brain is just taking its time before he’s ready to take on recovery. Hang in there. Three weeks feels like forever, but brain injuries just take their time healing.


#5

My son too had a rupture and spent a month in the PICU unresponsive after undergoing a craniotomy. Eventually the neurosurgeon decided to wake him up from his coma. They put my son in a coma to “put his brain on vacation”, as they called It. They told us that they hoped it would help it heal. After waking him up he had a bit of a road to recovery, but he is here and okay. I am praying for your son.


#6

hey, I can total feel for you & know exactly what you are dealing with. My 10 yr old daughter had a rupture 6 mo ago & she was in the PicU for 1 mo on a breathing machine , in a medically induced coma for 2 .5 weeks. I know how scary it is. email me @ ■■■■■■■■■■■■■■■■■■■■■■ we can chat more in depth & maybe I can answer questions or offer any advice to you. Hang in there, it will get better at times & other not, it's totally a rollercoaster, we are still on that rollercoaster 6 mo later, but it will work out. Faith has got us threw all off this experince.


#7

CD

My son had an AVM rupture 18 months ago at age 9. It was the most difficult thing my family has ever been through. I am an ICU nurse so my experience was very different than my husband’s experience. Also I have a great amount of faith in Our Lord that He allows these things to happen for a reason. We have 3 smaller children which made things quite difficult to manage as well but had a tremendous amount of support from our church family and from our friends whose sons our son played baseball with. My son was in an induced coma on the ventilator for 3 weeks before the craniotomy. It was a very difficult time with lots of bumps including pneumonia and failed attempts at extubation. WE even considered a tracheostomy at one point. after almost 2 months in the hospital we were discharged home in a wheelchair. Although he isn’t the ahtlete he once was, my son is enjoying life to the fullest again, baseball mostly. He still has a significant left leg deficit and walks with a brace and still has weeknes in the upper left extremity but cognitively we see no deficits. We are grateful; that he is alive! ITs not easy to trust that God has a plan for these children as we watch them suffer but knowing that Jeus is Lord and saying that to yourself may help. It really helped us. WE also found so much peace and happiness in looking at the day and finding 1 thing to be grateful for each day. Like the time the nurses told me my son had a bedsore, I decided to be grateful that it wasnt bigger than it was and it made me happy for a moment.

hang in there. Stay strong. please dont hesitate to ask any questions!!

We will pray for your stregnth and the healing of your son. my son is already praying for him!


#8

Hello. I am so sorry you and your son are going through this awful situation. My previously healthy 9 y/o daughter had a sudden rupture last December and was kept unconscious for three weeks before they could operate. It is an unbelieveably scary time. I remember reading through posts on this site, hoping to find something that would give me a sense of what was to come. One of the hardest things for me was the uncertainty of the situation, because each rupture and each brain are unique and each child's recovery varies so much. My daughter's AVM was in her cerebellum, near her brain stem, so the most risky time was the first few weeks with swelling. Once she had her crainiotomy the life threatening time was past, and she moved on to recovery. Initially she could not swallow, talk, sit up, hold her head - but she has progressed rapidly over the past five months.
Where was your son's rupture? Is he unresponsive of his own accord, or is he being kept sedated?


#9

I'm so sorry you are having to go through this. I'm so glad other parents are sharing their experiences. Perhaps it will give you hope and strength to get through this. Your son is young and that is a good thing in terms of recovery. Young people are often able to make great progress in a short time. Best wishes to you and your son. Please let us know how he's doing.


#10

My 8 year old son had two bleeds and his AVM removed 6 months ago. It was in his cerebellum, next to his brain stem, and it was quite large. He was also just playing in his room when it happened.. very scary. It took him about 3 months to start opening his eyes. 4-5 months to start following commands. Now he's talking, eating, sitting up. Had a lot of ANS problems, posturing, neuro storming. But he progresses everyday. Your son will too. It's amazing how children's brains recover.

While he's the hospital, take care of yourself and your family. It was very hard for us, and our other kids. Message me if you want to ask any questions or to talk.


#11

Almost 9 years ago I to had an AVM rupture, leaving me unresponsive and in a coma for almost 4 weeks. It was really hard on my family and friends, but everyone had faith and never gave up. When I did wake up, things advanced slowly but surely. This was the time I needed support the most. Both friends and family took turns staying with me and helping me with recovery and therapy. A few weeks later things started to make sense again and I was on the road to recovery. There have been incredible advances in this field and recovery can be much better and quicker than ever. Talk softly to him. I’m betting he can hear you.
My thoughts and prayers are with you and your son for a great recovery.


#12

My AVM ruptured in Match and I had a craniotomy on April 28. I pray hr will also be an AVM survivor. Prayers. I hope he comes out of this ok


#13

My son had a brain bleed out of the complete blue, 2 years ago, at age 12. He was in PICU for 10 days. It was decided to let the trauma heal and he did not have his embolization and craniotomy until 6 months later. It was an extremely scary time, but he got through it and I pray that your son will too. Children are very resilient. My son's 1-year angiogram showed him to be AVM free. Stay strong and try to find neurosurgeons experienced in AVM. I wish you the best.


#14

Hang in there…
This is Finn’s mom. He had a very similar trajectory as others mentioned (5 weeks PICU, 3 mos in-patient rehab, 4 mos day treatment, ongoing speech therapy). He was 17, now 20, and just graduated from high school! Exciting plans for fall. Things get better! Take care of yourself - it’s a marathon, but so worth it. You’ve received some good advice.
These are things that helped me:
Neurosurgeon: "baby steps, until one day strides"
PICU Nurse: "we celebrate EVERYTHING"
Other parents: "this is the time you take help that is offered, but make it simple"
Use the Caring Bridge website if it helps you- my other kids set that up, I posted mostly but Finn’s siblings/uncle did too.
Learn the nurses, attend rounds- things that are confusing / don’t make sense - ask
Keep your inner Shirley MacLaine in check, unless needed.
Keep your child’s friends aware (CB helps with that) - they’ll be needed after discharge. Finn had visitors even in the PICU by his closest friends and their parents
Going out for coffee/tea with your friends
I’m in St. Louis, if you want to talk by phone- message Finn. I’m a good listener.


#15

yes, yes & yes. Very simular experince almost, my daughter spent 4 weeks in the PICU on Ventalor --2.5 weeks in a induced coma, 1 week in step down, 6 weeks at rehab, then back & forth from the hosp to home quite a few times few days here & there, Iv picc line for antibotic for 6weeks, next mo will be her 2nd crainatomnomy surgery since she rejected her real bone flap --a fake prostetic one will be put in, with the help of a plastic surgeon. Haven't done the angio yet, still trying to recover she suffered an AVM intercrainal hemerrage on the rt Partial lobe with 2 hemmrogic strokes that has left her in a wheel chair unable to walk or talk, on a feeding tube & lost all bowel & bladder functions so needing to be changed, has a home nurse. she's 10. our kids are miracles to have survived all of this, blessings from above, loveable..amazing


#16

Being on the PICU and seeing your child in that condition is not easy. Hang in there. Each day as the swelling goes down within your son's brain, you will see little glimpses of change/progress. Celebrate them, journal them and share them with others. The changes, no matter how small they are.... are positives and will give you the continued strength to move forward. The swelling can take up to a year to dissipate. My son Gavin had a massive bleed when he was 6 with a previous smaller bleed 3 months prior. He was on the PICU for a month, with 2 1/2 weeks in a medical coma. I managed by focusing on each day and not looking forward or back. I still use this strategy today. He is 8 1/2 now and continues to make strides every day. Sending positive thoughts and strength your way.


#17

Thank you everyone for replies. We’re frazzling here. He’s extubated, but not able to swallow, so he either drools like a faucet… or aspirates. They’re preparing to graduate him from PICU to regular peds inpatient floor.
We have two issues now:

  1. We’re being repeatedly told to stop hovering over him and take time away for ourselves. However, since he is unable to control his airway entirely, and since an RN isn’t with him constantly, he’s often uncomfortable and/or aspirating due to heavy drool. Just tonight he vomited and aspirated some. He would have sucked down a lot more had my wife not been right there. And yet they still say not to hover. WTF? So how can we ensure his every chance of success and not burn ourselves out?
  2. What is the best way to find out if a) there is an AVM specialist nearby, and b) if insurance would cover a specialist?
    It is agonizing, absolutely soul-destroying, looking into those empty eyes. We so want him to be ok.
    Thank you again, all, for your support and kindness.
    CD

#18

When they sent my son out of the PICU, into the regulat hospital.. we went through the same thing. I requested he was left on a machine to monitor his oxygen, and get sunctioned hourly. But he was luckily at a great hospital, with his room next to their desk. But it is hard.

I think somewhere on this site has some recommendations on a neurosurgeons. What about the one who performed the surgery?

Btw, just wondering.. have they put him on a stimulant yet? They tried several with my son.. the third medication they tried finally got him to start moving around.


#19

Hi Concerned dad, ok first when they say do not hover, its a parents natural extinct is to hover, go with your gut feeling. I found that the PICU nurses and even the Doctors was taken aback by us being there 24/7. I put it to the fact that a lot of parents don't stay 24/7, they come and go and this might come across as odd to them. But at the same time they might be picking up on something that you are not. Take note of his pressures, when you guys are around, when you are quite, when you are talking to him and loving him....We found that everytime I spoke to my son, his pressure would elevate and that is when the nurses asked me not to talk or touch him. It was the worst thing to be asked, as you did not know if your child would be alive and what if something had to happen and you did not get to say I love you...But you do what you have to do. If this is not the case then, its tough but you guys need to support eachother and take turns, as having your mind at ease that your other half is there with your child. With regard to your other question I am afraid I am from South Africa and not able to assist you on that.
Your guys continue to be in my prayers. You need to HAVE FAITH. BE POSITVE. Every word that comes out your mouth needs to be in the POSITVE. For example. His eyes will soon be focusing...OUr Neurosurgeon told us that it would take up to three weeks for my son to focus....my son took three days, every case is different. Just keep BELIEVING!!!!


#20

Dear Concerned Dad,

I am so sorry for what has happened to your son and your family. When I saw that your son's AVM was in the posterior fossa I knew I had to reach out to you. My daughter, 19, had her bleed in the same area. The circumstances were the same as she had no prior symptoms and one minute she was fine and then next unconscious. She too was in a coma for 3-4 weeks, hard to remember now as it was 2.5 years ago. My husband and I and lots of family were with her 24 hours a day during that time and believe me, the hospital will adjust to you being there. We kept talking to our daughter but also allowed her time to heal. At about 6 weeks our daughter started to raise her eyebrows on command. It was a tiny gesture that often she didn't do when the doctors or therapist were there so it took them all a while to believe she was "there"! Keep believing. Ensure your child gets physical therapy and therapy even though it doesn't seem like it is doing anything it is! Our daughter is still improving. It has been work on everyones part but with therapy and your obvious family involvement it is amazing how the young body can improve. Please feel free to ask me any other questions that you might have. Every injury is different as is every path to recovery but perhaps I can offer you hope. Hang in there and you are doing the right thing by being there. I'll pray for you all.