Desertlily: yes it is hard, but I'm sure both of you will come through this! Also, remember 1 thing: your daughter is really LUCKY she is so young...if she had been older, this would have taken YEARS...Good luck; I''m sure everything will be for the best!
I have to agree with this most recent post- your daughters age is a really positive thing. Children are resilient and tougher than we think they are. My son was 20 when his AVM ruptured and he was an athlete, and when he was in the ICU new nurses would rush into his room thinking his pulse was too low until they realized his age. It got to be kind of amusing.
Take a few minutes each day for YOU. Find a corner, pray, cry, fall apart, meditate…whatever you need to do so you can keep on being Mom. Btw, you’re tougher than you think too. Praying for you and your family.
I am an AVM survivor myself, but I am a parent & honestly I can’t even imagine what you are going through right now. I wish I had some great words of wisdom to give you, but I don’t. I will tell you that I agree with many of the other posts about her age, kids are pretty tough and I don’t know what your faith may be and I sincerely hope I don’t offend you but you are in my thoughts and prayers. Keep us updated on how she is doing and try to take care of yourself as well.
Yes, I have been there. My son had a bleed in October 2012 and that is when we found out about the AVM. He recovered quickly, out of hospital in 5 days. However, he had a massive bleed 3 months later and as I read your post, his symptoms were very similar to your daughter's. He was just 6 year old at the time. PICU for 4 months, drains, cranitomy, cathether to monitor brain pressure. After PICU, he was on rehab floor for 3 months and then we took him home. We followed up with outpatient rehab 4 times a week and a ton of home carry over. It was rough and they weren't sure what he was going to come out with in skills with his massive damage. He is turning 8 soon and is AMAZING. Kids are resilient. He has deficits similar to a stroke patient (right hemiparesis, some memory stuff), but he continues to strive every day. We don't give up on working with him on skills. Take each day as it comes. Talk to her. Be specific with you prayers. When we were in a 2 week period on the PICU where his condition was intense (3-4 team members in his room around the clock) I would ask the doctors lots of questions regarding what needed to happen for him. For example they would tell me that they needed his pressure to come down to a certain number, I would pray intensely for this to happen. I would ask loved ones in heaven to whisper in his ear what he needed to do. And then things would happen.
I will keep you and her in my prayers. If you would like to talk directly, I would gladly speak with you. You can private message me too if you want.
correction.....PICU for 4 weeks. Not 4 months.