My son AVM burst

hi Jana, you and your family and son will be in my deepest prayers. My father had open heart surgery and went through the same thing your son is going through. mind you my dad had an anyresum on his aorta that was going to burst and he had just had a kidney transplant 6 months prior. Just be patient and let the doctors take care of your son. If your son is younger then 13 then he might be getting more sick due to his low immune system (which happens anytime you have water in the lungs). Please dont worry to much and be patient and i believe your son will start to recover soon and become more healthier then before. Also make sure they don’t sedate your son to much because then we wont be able to show them that he is recovering if he is always sedated. God bless

Dear Jana, Each minute, hour, day is a step closer for your son to wake up to you and your family’s deep love for him. Remember, the people that keep asking you all those questions do not understand. We on this site all do. When you get frustrated and overwhelmed , keep coming back to this site. Thoughts and prayers - Cindy

Thank you all so much! Tuesday my son was supposed to get a trachea put in and when the time came around to go for surgery the surgeon was stuck at another hospital, so we lost our OR spot and procedure was rescheduled for Thursday at 11am. Today at 11am no surgeon, ten they said rescheduled to 1:30pm by 2:45 we were losing hope of it happening and around 3:30 it finally happened! Confused on how should I be feeling… Am I happy he is finally getting this procedure done and the tubes out of his mouth, faithful that God will see him through… scared and nervous of what’s going to happen now once is done and he isn’t talking! What if he doesn’t speak? What if he is opening his eyes but still not seeing me? Am I ver going to hear my son tell me his favorite sentence??? “RELAX MOM!” Is he going to ever look at me and recongnize me? Will he remember all the wonderful memories we have shared together? His sisters? His dad? Will I ever get those lovely hugs from him? (he is a big time huger) Baseball started for the Summer and he always loves to play! It’s his favorite sport… Will he ever be the fastest runner again? He loves to read! His in the gifted program! Has worked so hard to perfect his writing, loves to play instrument and is the school band! … I am so grateful for my son being here with me, alive and breathing even with the trachea in place but still breathing!!! I feel guilty for thinking about all of those things when he just had another successful surgery!!! How can I breakdown when he is right here and fighting every obstacles that has come his way? Fvers, high blood pressures, Colds, bacterias, surgeries… I kneel telling myself he is sedated and as soon as he is off then he will start doing all of those things! Then I tell myself how ridiculous I am being and selfish, uncaring, unrealistic, and many other not very kind things… How can I look at it that way? Why am I questioning anything? Just be glad he is here and that’s it! Right? The trachea is in and now they will begin to bring him out of sedation! Tonight he has squeezed my hand, moved his toes and made this face as he woke up for a second that just broke my heart because he looked like he wanted me to just make it all better and take him into my arms!!! But I can’t! There’s nothing I can do to make it all go back to normal! To make all of this disappear and for my son to not have to go through all this pain and anguish! I get to sit here and watch as he tackles each stages of dealing with AVM recovery! God I need a miracle!!! I don’t even know how many times I have asked for one!!!

Keep asking…God is strong! PRAYING FOR YOU!!!

Hay mate, you are such a strong person and family to be dealing with all of this, squeezing your hand and moving his toes, that is great. Of course you are great full and of course you are scared. You guys are just amazing, keep praying, as I am sure all of us on this site are doing for your family and your beautiful son.

Kia Kaha Tiaki

DM

Hi Jana, I completely understand how you are feeling and it is so frustrating. Brandons temp and blood pressure were also out of control they had to sedate him to control his pressure, they put him on artic sun which is a body suit to get his temp down, he had 2 infections also. we were heading down the path of a trachea but he didnt need it in the end after many discussions we found that if he needed it we had to have it, but we did ask what were the pro’s and con’s for the trachea and we asked more than one doctor. I learnt that you need to focus on one day at a time and not days ahead as we had days of one step forward but 2 steps back and that is really hard to deal with, we also had a doctor that said to prepare for such situations as this is common and not to think of days ahead. My advice to you though is you are his mum and you know your son, if you are not happy then let them know and what your concerns are as they are caring for your son, also go with what your gut tells you I had to push and then demand the doctors tell me why he can not have his medication for depression and obsessive compulsive disorder as I could see problems occuring with him this was when he was awake and starting to communicate, after putting it to them in that way they resumed his medication and he is now much better. We spent a month in icu from the original 10days but he is now improving all the time even though in icu you dont know if that is going to happen, but it will. Take care and if you need to know anything please ask I am here for you, remember never doubt your self you know best and it is amizing how reslilient children can be. Take care Tracey

Jana-My heart and prayers are with you and your son. It will be okay. God bless your family…Suzi Santamaria-Kono

Jana,

Your situation sounds very similiar to what I just experienced with my 12 year old son in Feb., we spent the next 73 days in the hospital after he passed out after a severe headache. They not only drilled a hole in his head but removed the back of his skull to relieve the pressure. His lungs were filled with fluid as well, spent 7 days in an induced coma so his brain had time for the swelling to go down. He was on a breathing machine for approx 2 weeks before they performed a tracheotamy. We didnt want this and didnt know if it was going to be permanent but it was the best thing they could have done for healing purposes. This helped clear his lungs, and the swelling of his brain made it so he couldnt control his throat muscles. Its good to hear there are no damages to your sons brain. We have been dealing with outpatient therapists for the last 3 months teaching my son fine motor skills but consider ourselves very lucky. Our son was sedated off and on throughout the first 2 months, the only thing that concerned me was coming off them was hard because he was addicted that quickly, he couldnt sleep at all and when he did it was only for 20-30 minutes. We kept a log of his sleeping and he had slept total of 6 hours in 3 days. We were there every minute for him, stay strong for him and good luck with everything. Best wishes to both of you.

Well Chason is completely off sedation now and going through the withdrawals right now due to being sedated for four weeks now! Although still not fully alert or awake he has been moving his arms and legs alot! Breathing more on his own but still on the ventilation attached to his trachea! Don’t know to be excited or nervous because one doctor gives you positive while the other only points out the negatives! I’m a rollercoaster of emotions while trying to remain strong for my family because they all look to my faith and strength to get us through this and I’m not sure I am as strong as everyone think I am! This is the hardest thing I’ve had to face and while trying to remain only focused on the positive and letting God take care of the rest we encounter days like today when one of the doctors who hasnt even spent much time with my son at all to even evaluate his progress comes in and only says negative comments!! Knocking me off my positive track!!! Frustrating!!!

Jana,

Trust your instincts and what you see from your son. You know him best. The doctors and nurses see a lot of rough outcomes, and some are trained to be critical and negative. Don’t let that get you down. Look how much progress he’s made so far. He’s slowly coming off sedatives, moving arms and legs. Those are all wonderful things. Keep your positive thoughts!!!

Best wishes,
Tina

Hi,

Has anyone heard anymore news from Jana? Been thinking about her and her son a alot!!

Hi Jana, we’re new here but hope your son is better and would love to hear how all is progressing

Hello everyone! Chason has been doing well thanking God everyday!!! Upon arrival here my son had almost died! God placed his angels here at Saint Mary’s because leading the group Dr Patel saved his life and his brain!!! God is restoring him one day at a time!!! He has gone from not moving at all, looking like he wasn’t alert or aware of anything, sleeping all day, then he started moving his toes, feet, legs, hips and now moving his arms plus starting to hold his head up alot more!!! He even follows us with his eyes more and when he is alert he even answers a few questions with his head! We went from machines breathing for him, to having a tracheotomy and now it is all gone and he is 100% breathing on his own! He shocked even the surgeon who decannulated him because he said we were witnessing a miracle, he had never decannulated someone so fast and seen someone heal as fast as Chason has been!!! We aren’t talking yet but he is trying to make more sounds now where before he wouldn’t even try! Plus also doing more things on command when he is alert… God is restoring him from the bottom up leaving the brain for last since that’s where we started it all!!! Thank you all for your love, prayers and support it has helped me get through all of this and now he is doing well with rehab we expect full recovery!!! Will keep you posted!!! God bless<3

Thats fantastic news Jana!! I am so happy for you xxxxxxxxxxxxxxxxxxxx

Oh Jana, What a beautiful story of miracle healing - Cindy

I had what sounds like a similar situation. My AVM started as a headache and I passed out. The AVM leaking caused a 7.5 centimeter blood clot which ruptured. I had a crainiotomy and had the AVM removed. I had machines keeping my whole body going, blood pressure and all. I had seven cardiac arrests. I had surgery on Nov. 6, 2007, vent out on Nov.20 and trachea put in, went home Dec.19. I don’t remember much because I was in and out the whole time. I know they kept me sedated pretty much the whole time as well. Where was his AVM located? and where are you located? How old is your son? I am in Gainesville, Florida. I’ll help answer any questions I can about what happened with me for you. I’ll be thinking of you and praying for your son. Really, let me know if I can help.



After I wrote this I saw the other comments ahead of mine. I am glad to see everything is going better than the first comment I read from you! It is a long process I know but it does get better. Yes miracles do happen and I’m so glad it happened for you and your son! A great book on the subject is called My Stroke of Insight by Jill Bolte Taylor, a brain scientist who also had an AVM. Each story seems to be different depending on which part of the brain was affected by the AVM.



I’m happy for you!

Jana, your situation sound so erie similiar to my sons and brings back alot of memories. The trache was the best thing for my son after looking back. We also were against it but knowing what we know now its a small thing in the big picture. My sons speech was also slow to come around and 5 months later still needs fine tuning but some hope for you is that therapy is amazing. The doctors were also amazed at how quickly he healed, how quickly they were able to remove the trache and how quickly he started moving his limbs. Good to hear the same from your end. Im so thankful for doctors involved and how close he was to leaving us to how far he has came. There is a huge chance he will be so close to where he was before so continue to hope and continue to push hime to improve. I will be keeping and eye on the posts.