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AVM Survivors Network

Son's surgery scheduled in three weeks...please advise


#1

Hello,

My son is 12 years old and having a surgical removal of his AVM in three weeks. I'm writing to ask any of you that have brought a family member for this type of surgery a few questions. The hospital where his surgery will be allows a parent to spend the night in the ICU. Is there anything you would recommend I pack for the surgery? I do plan to check with the hospital's policy as far as what can be brought, but is there one thing you can think of that you wished you would have brought or done?

For those of you that have had this surgery before, is there anything that helped calm your fears and anxiety before the surgery? I'm trying to keep my son as comfortable and confident as possible. Was there anything you can think of after your surgery that made you feel better? Can you think of anything someone may have said to you that left an impact and made you feel better?

I appreciate any and all advice you can give me. I'm trying be strong for my son, his two little sisters, and my husband. This has been the hardest thing my family has ever experienced and I know we will get through this. I am just getting more anxious as the surgery date gets closer and am desperately seeking advice.

Thank you so much for reading my post.

Sincerely,
Ginger


#2

I wish your son good health. I am wondering,did you get a second opinion?


#3

Ginger I am so sorry your son and your family is going through this-
Not to scare the crap out of you but go online and teach him a hand signs for pain, water, food, yes and no etc after my first surgery I had a stroke and could not speak for 24 hrs
I could write but since have taught my family some basic signs

Lip Balm, some hard candy, a brush, sunglasses light can be painful, maybe his favorite music that you can play, a photo of your family, favorite snack food. Ginger ale.

Make sure comfy clothes to go home in he is going to be sore. A mirror he may want to see what it looks like-

if he gets nausea at all make sure the doctor write a prescription for Zofran that the nurses can give him

get some gift cards - I go to costco and grab some that are $25 and hand them out as thank yous to the good nurses and the nurses assistants.

Okay for home use get him this pillow - you can put it in different shapes and its helpful to sleep at home

http://www.amazon.com/Oversized-Pregnancy-Maternity-Zippered-Exclusively/dp/B00FFACNGE/ref=sr_1_1?ie=UTF8&qid=1462158083&sr=8-1-spons&keywords=pregnancy+pillow&psc=1

At my first surgery there was really nothing anyone said that could make me feel better about it. Is he having a embolism or craniotomy?

Hugs
Angela


#4

The only thing you can do is let him relax and take it easy with minimal stress at all...its hard to get through but if he wants something let him have it would be my best advice...please keep us posted on the outcome... God bless!


#5

Hi Ginger,
My wife just went through AVM surgery 5 days ago. All went well but it is a bit scary. She spent two days/nights in ICU and I stayed with her on the sofa in the corner. Be prepared not to get much sleep. While your son will be sleeping allot due to the drugs, no such luck for you. I recommend both you and your son get as much rest as possible the couple of days before.
What to bring? Less is more. We brought allot of stuff that just sat in the corner of the room. I would recommend the following:
Comb/brush
Tooth brush/Toothpaste
Reusable water bottle
Bring a few small snacks that can be put in a backpack
I brought my iPad with some games and music on it. I got allot of piece out of soothing harp music that was very calming.
Didn't bring any reading materials as the ICU is kept dark so she could sleep.

I hope all is going to go well as I am sure it will.

Martin


#6

Hi Ginger, I am in the same boat as you are, waiting for my 14 y o daughter's upcoming craniotomy May 26. She had a sudden bleed back in December and that's how we discovered the AVM. It was very frightening not knowing what was going on (she had no medical issues prior) and waiting for the blood to clear up so they could do another angiogram to figure out the cause of the bleed. I am less terrified this time (though still afraid and anxious..) around since now we know what the problem is and the doctors are confident they can successfully remove the AVM. During our stay at the ICU last December the staff were very nice and we were given everything we needed, but one thing from home my daughter loved having was her Hello Kitty soft blanket that she used all her time there. This time I am thinking to also bring her pillow and some soft socks as the rooms get a bit chilly at times. Also, last time she had very strong light sensitivity and we had to keep her eyes covered even with all lights off and curtains closed, so I will bring in a good soft eye mask. Lip balm is a must and even some hand cream as the rooms get dry. Not sure if any of these items would help your son but I thought I drop you a line to let you know you are not alone in this journey. Also, not sure what your beliefs are but prayers kept me going and still do. Also, don't hesitate to ask the hospital staff for anything you or your son may need during your hospital stay. From my experience staff in the ICU are phenomenal human beings! Also, ask your son's friends and teachers to email or text well wishes...my daughter loved that part and felt that people cared! Wishing you all the best and quick recovery AVM free for your son! :-) Dina


#7

Thank you so much. Yes, second opinion agreed that because of size/location/his age, surgery is the best option because it’s considered cured after. Other treatments have a high risk of recurrence. Thanks for the reply!


#8

Thank you so much. I’ll be sure and update after the surgery. Thanks again!


#9

Martin,
Thanks for all the great advice! I didn’t think about a lot of things you had mentioned. I appreciate it and hope your wife has a painless and speedy recovery. God bless you.
Ginger


#10

Dina,
Your message was so comforting. This could not have possibly come at a better time. Today, after I put all my kids in bed, I had to have a really good cry. Reading this, as well as the previous responses from others was truly like feeling my guardian angel give me the most comforting hug. I have been taking notes of everything suggested-lip balm is definitely a popular one! Thank you. For your advice, your kindness, and your prayers. I will be praying for your daughter as well. I know all will turn out with a great result when all is done. Please keep me posted and God bless you.
Sincerely,
Ginger


#11

Angela,

Thank you so much for all of your helpful advice! You listed so many things that I would have never thought about! In answer to your question, he is having a craniotomy. I have been reading through and catching up on all of the wonderful responses from everyone who replied to my post. You are all angels in disguise. Thank you. God bless you, Angela.

Sincerely,
Ginger


#12

Hi,
Whoever is close to him, uncle, aunts, cousins, friends, try to get them to visit while he recovers in the hospital, it will make him extremely happy. I know it made me happy. Make sure to tell them beforehand, only happy conversations. Best of luck to your whole family, especially your son, I believe he will be fine.

Richard.


#13

Hi Richard,
Fortunately, we have a ton of friends and family that will be there to show support. I’m so glad that you mentioned happy conversations only! It’s something I just assumed people would do, but now that I think about, I definitely will. We are all staying positive and I agree with you…he will be fine. :slight_smile: Thanks for your response.
Ginger


#14

Hi Ginger -

I just had surgery to remove my AVM a couple of weeks ago. I wasn't brought up in a religious home but have been going to church off and on the last few years. It was really important for me to get my head in the right place before surgery. We actually went away for a couple of days beforehand to a nice resort where I could just listen to tapes (Joel Osteen and meditation) and get some peace and quiet beforehand. I also had a visit with a "healing touch" nurse just before hand. I got myself into a blissfully calm state of mind which was so helpful. The biggest things to me were the nurse telling me that I wasn't alone. That she could feel the divine energy entering my body and that all of my angels would be there to guide the surgeon and technician's hands. Felt good to feel others would be with me. My husband also posted to Facebook a couple of days before and requested prayers so as not to leave any angle open. It was amazing how many people responded and sent prayers, love, healing energy my way. I just felt loved and protected walking in there and visualized that everything would be all right on a go forward. The power of prayer is just amazing! Love and prayers to your son and family as you go through this.


#15

Hi Ginger
I am very sorry that you and your son are going through this. It’s never easy. I was 13 when my avm was found, I was terrified. One of the worst parts was that the doctors never talked to me because I was so young. They would talk over me straight to my parents. My mom had to make them talk to me. That let me feel that I finally had some kind of control in my life.

Also when my avm was found my dad gave me a stuffed dog. Every hospital run, that stuffed dog went with me. I would have to stay there and my family would have to go home. As long as I had that dog I had my family too.

There are lots of little things to make them smile but the most important thing is family.


#16

Chele,
Your reply was so uplifting! I am so happy to hear about your successful surgery and walk with the Lord. He is always good and always there, no matter what. I thank you for your response. God bless you.
Hugs
Ginger


#17

Ask your doctor for 1/2mg of chlonazepam. It will calm your nerves and help you sleep. Afterwards it's help to keep you steady and help (not eliminate) emotional outbursts.

Maybe a small picture album of your family?


#18

Hi, reassuring words that everything will go or has gone well helped me a lot…also being around positive people and family members is very important… God bless!