Just thinking about all that my baby girl has to go threw first a drain on both sides of her head, after finding out about her avm, she's 10, then a monitor catheter in her head to monitore ICP pressures, then the Cranitomy surgery to remove part of her skull, then a central line, then a Lumbar drain in her lower back to drain brain fluid, & now they are talking about putting in a shunk in soon, so much for a young person to endure...I could just cry anyone else have to go threw all this. she's been in the iCU for almost 4 weeks now & on the vent the whole time.need people right now.
Hi Desert Lily... I'm so sorry you are dealing with this... I can't think of anything more stressful than to see your child seriously ill. It sounds like she is in good hands and being well taken care of. I've not shared this experience, but I have experience dealing with a life-threatening illness resulting in numerous brain surgeries for my husband.
It is so important to reign in your fears and to stay present and in gratitude... thankful that you both have access to great care; thankful that there are options to make her better; thankful for her resilient spirit that can take on this fight; thankful for those who are around you and surrounding you in prayer.
I have some resources on a website called: Peace on Demand (www.peaceondemand.org) Perhaps you can find some solace there and in this amazing community! We may not be physically with you, but we are spiritually with you! God bless....
Hi Desertlily83
I was 15 when my AVM ruptured. That was in 1981. My mom slept on a cot for a month. I was fortunate (I can'tsay lucky) that I came through with little or no issuses. I was told back then taht childre heal faster, and I did. Medicine back then is nothing like it is now. Have faith, stay with her, and ask questions. If your motherly instinct tells you something else get a second opinion. My prayers to you both!
My avm ruptured when I was 13. I had 3 different surgeries in one year, whilst trying to come to terms with what had happened. The main thing for me was when I realised that I wasn’t alone, and that so many other people had experienced what I was going through. I’m now 15 and pretty much fully recovered, just been left with a few issues concerning my memory and vision. And of course tiredness, which most AVM survivors have. You’ll be in my thoughts, and in my prayers, keep us posted.
I didn't have what your daughter had, but my AVM is in my chest, and I nearly died. Stopped breathing for three days. I have had too many catheterization procedures to count. I will be thinking of you and your family.
Hi Mom,
Hang in there. I’m a parent of a AVM survivor and had sleepless nights when she was having her procedures. She had 3 procedures at different times in a matter of her first 3 years. That was in addition to her multiple hospitalizations for seizures.
I have learned to channel the “worry” energy into attention. So I pay very close attention to my daughter. I am her best advocate in understanding her comfort, pain, likes/dislikes. There are so many unknowns during this very intense moment in your life. I try really hard to understanding and processing the unknowns by learning, seeking answers and working with the professionals. Sometimes it helps them with their creativity and thought process.
Don’t get me wrong. I worry like you wouldn’t believe. But I had to pass the time and be in the right mindset to help make the right decisions. I worry every day and always sleep with one eye open.
Stay focused on what is going on in front of you. I couldn’t change any outcome but I wanted to be completely part of the experience. Only positive thoughts to you. Take care Mom.
Here's hoping everything turns out okay for your child. I am also the mother of an AVM Survivor and I empathize with you. Nothing worse than to see your child suffer but I know you will persevere because what is the alternative?
I'm so sorry about whats going on with your daughter. My 7 year old son AVM ruptured twice, and surgery about a month and a half ago. He hasn't woke up since. He had the Lumbar drain, and then the shunt. I can honestly say the shunt is so much better. We can move him, and do therapy. Nothing sticking out. I can see a little lump near his ear, it's like a button thing to asure the fluid is going through the shunt. It was a little scary at first, but we don't worry at all anymore about it. My son was in the ICU on the vent for 4 weeks. He coughed out his own breathing tube, and was breathing on his own on the day his trac was scheduled. Kids will surprise you. I will keep your daughter in my thoughts... this kind of thing is the worst for any child or family to go through.. especially the holidays.
My daughter was older when her AVM burst.
We did the hole in her skull to relieve the pressure in the ER. Also did the monitor, the shunt, the trake, the peg tube, the ventilator, etc. She was in bed for so long that we had a surgery on her achilles tendons to stretch them so that she could learn to walk again.
For what its worth, our experience with the shunt surgery was, that it is a relatively simple surgery, maybe on scale with the peg or feeding tube. I believe the tube is placed just under the skin.
Someone at the Sheperd Center for Brain Injury, where we took our daughter, said, "The only way to get through this, is to get through this".
It didn't make much sense at first, but as the days turned into weeks and the weeks into months, I realized that there was no stopping anything. It was just going to continue until we were "through it".
Your life will be forever changed.
Your daughter, with her youth, will very probably be able to adapt and thrive with all of the challenges that she faces.
I wish that I could help make it better or at least easier for you. I can say that it will get better as time passes.
Dad
My AVM first bled at age 9 and then again at age 15. I Experienced just about all of the same tests as your girl. Except my AVM is in-operable, they treated mine through embolization. I fully recovered from both of my bleeds and was able to resume a regular lifestyle. Your girl is strong for enduring all that she has, and I suspect that she will pull through this and be able to resume a regular life. Your girl has you on her side and I hear how much you love her. The love you have for her is more powerful than any medication, or medical procedure that the medical professionals can ever treat her with. I will keep you both in my prayers. Have a blessed holiday.
Never give up HOPE. I can give you so much medical advise, and I will if you ask… But before I knew anything, all I had was hope. Much love to you and your loves
This is Current17’s mom. My son was 17 when he went through all the things you mentioned, including a weeks long coma. 5 weeks in the PICU. 2 years ago all my girlfriends provided an entire Thanksgiving and then a Christmas for my whole family(5 kids & me). Things that helped were: letting people know I needed help (for me that was someone to take me out of the hospital for an hour twice a week for coffee, meals brought to the hospital so I could unload with other than my own kids), visitors of his friends w their parents (child life helped w this), someone gave me a subscription to a newspaper online, some friends took my 91 y o mom out to lunch once a week… The end result? All that care taking of me ended up with all of us having strength, energy, focus and patience to get through surgeries, doctors conferences, early rounds, steps backward etc. I have never experienced such generosity, compassion, kindness before. I can never repay all that was sent my way. And, now my son is so grateful to everyone who helped his family so we could be there for him.
With the help of friends, virtual and tangible, family and the kindness of healthcare folks you will help your daughter begin the journey of recovery- which will come. Our neurosurgeon said, keep your head on a swivel and celebrate every single baby step. Lastly, though I wasn’t inclined to, the nurses encouraged me to take photos -a personal choice, but I’m glad we did because it helps my son who gas little memory of all that you could now recite in your sleep (ICP, O2 numbers, agitation, meds, etc.) understand just HOW FAR he has come. Keep your eyes looking forward and embrace compassion extended to you. She knows you are there. When he was still in the coma, on the vent and days and nights seemed bleakest, my mantra was, “you be strong in there, son. You heal on the inside and we will be strong on the outside while we wait for you to return to us.” Sending you calm and courage.
desertlily. I am 64, but was 10 when I had an AVM bleed and craniotomy, was in a coma for a little while, and had some terribly old and barbaric tests done. It was probably harder on my Nana that it was on me. I think it must have been easier than to have it happen when you are older. I don't know, and it must depend on the location of the avm. It took a bit for me to get better, but have faith and hope. I am hoping she will come out of this fine.\
beans
If you need another mom
To talk to send my son (current17)a MSG and I’ll send contact info
@desertlily83: My name is Michael, and, albeit as a patient, I had similar experiences. In late 2004, when I was 15 my AVM was discovered. Between December of 2004 and July of 2005, I had 8 embolizations (one per month) and followed by a craniotomy six days after the last embolization.
My inpatient care included 23 hours of surgery, 2 PICC llines being installed, a shunt being installed etc. It was quite complex, but since this isn’t really about me, I’ll spare you any further details. My ultimate point is that though this is definitely a trying endeavor, it’s not impossible and perhapsone of the best things you can do for your daughter at this point is just to be there for her.
Having seen firsthand the benefits it provides, I ask you not to be afraid to introduce a little humor to the situation.
Humor will show your daughter that you aren’t absolutely consumed by the gravity of what is going on and her responses will serve as reassurance of her physical well-being throughout your experience.
The times shared help forge a bond that is difficult to break.
As an additional note, the relationship between my mother and I has never been stronger.
I am sorry that you and your child are facing this. Your daughter is very blessed to have such a loving mother. It is torture for a Mom to have to watch her child go through so much. You have the strength to get through one moment at a time. Try not to look too far ahead. With your daughter's youth comes a great ability to heal and recover. She will probably not remember most of her time in ICU. We don't get to choose the cards we're dealt in this life. We just have to play them the best we can. Life is not fair at all. We who have to deal with AVMs as survivors or family members are very fortunate to live in a time when there are medical treatments available for AVMs. Not too many years ago, there wouldn't have been any. Wish I could give you a real hug but know we understand your grief and we care.
The best you can do, is be there for her, show no fear so she will know that everything is going to be ok. Make her laugh, laughter is the best medicine, and it will take her mind off of what she is going through. I just had a rupture, dose of radiation, a shunt and told it would disappear in a year. 10 years later, nothing has changed but I am an eternal optimist and believe that it will. I keep my head up and try to laugh and make people laugh every day. Good luck and I hope and will pray that everything goes well.
Just be there and love her that’s the best medicine for her. Be sure to take care of yourself too, she needs you to stay strong for her. My thoughts and prayers are with you