My daughters having brain surgery

doorsjam wrote:

Thanks guys! Its really weird to have wished brain surgery on your child. But we have had a really rough year with seizures. She hasnt had a seizure free day since March 31, 2006! We got her down to about 5 a day but earlier in the year it was 10-20 and they could last up to 15 minutes.

I am terrified about this. It could be the miracle we were looking for or it could be a surgery that causes some other damage and the seizures still dont stop. But I just feel like we have to take the risk. She's only 3 but I keep thinking, she will never be able to get a drivers license which will then limit where she can work and where she can live. At this point I would be afraid for her to walk anywhere alone or ride a bike because if she had a seizure she could get hurt or disoriented.

Cassidy is a twin and it really effects Kiley too. Since Kiley was 2 yrs old she could tell when Cassidy was about to have a seizure and would come tell me. A 2 yr old shouldnt know that kind of stuff.

It broke my heart when we were at Notre Dame this mothers day and Kiley threw a penny into the pool to make a wish. I asked her what she wished for and she said "that sister gets better and stops having seizures". That sucks. She should have been wishing for toys or something. Not something as heavy as that.

So, yep, I will be posting in here because I will need all the support I can get going through this. But keeping the faith and positive thoughts that this is the right decision for our family and our little girl.

My God. I have a 3 year old, but in no way could I possibly understand what you're going through. Your faith and family will lead the way in your decision, and I pray that will bring you peace.

Best of luck to your daughter, you, and your family!

Good thoughts to you and your family.

Take care.

Not to mention, your daughter is incredibly brave for going through this at age 3. One would think that she would not have the ability to remember this later in life, but I still remember the surgery that I had when I was 4, and the body cast I was in for the next six months. Hopefully, she is young enough for this experience to eventually get buried deep in her subconsciousness. However, I think only time will tell.

Claire Daines in an interview once said that she can remember being held as a baby. So, what I'm getting at is that she may need extra emotional support throughout her adolescence as a result of this surgery.

I can actually still remember the smell of the knock out gas I received as I lay on the operating table. It smells like a felt tip marker. I instantly remember being on that operating table every single time I pop the cap off of a marking pen to this day.

And the hospital food....I sent the nurse back to the cafeteria three times because the eggs were too runny. Only at Children's Hospital do the nurses wait on their child patients hand and foot, me thinks.

And then there's the opiates problem. She'll be exposed to opiates to manage the post-surgery recovery. This will set her up later in life to be more susceptible to addiction/dependency.

But, you see, this was 1981 and the go-go's had just released "Our Lips Are Sealed" and my nurse's voice sounded just like Belinda Carlisle's as far as I was concerned. And, believe it or not, that is the most pleasant memory that I take with me from that whole ordeal.

So, what I'm saying is basically that even at 3, I can only imagine how difficult this must be for her even though it will ultimately serve in her best interest.

My prayers and good wishes go to your daughter and all your family. I think I can safely say this applies to everyone on this board who may not have seen this thread.

hell yeah bump this everyday for her >>>>........

doorsjam wrote:

Thanks for the bump! Still havent heard from the neurosurgeon. I am calling on Monday.

Isnt it some kind of torture to tell a parent we want to do brain surgery on your kid but we cant tell you when yet?

I'd think every single moment is torture....so damn scary and happy at the same time. I wish you peace of heart and lots of great vibes coming your way!

oxc

Thanks for the update.....may the process begin and go smoothly.

oxc

I didn't see this thread until now. Lots of love to you, your daughter, and your family. I can't even imagine going through something like this with my kids. You're a very strong person, your girls are so lucky to have you. Best of luck to you on Thursday, and please keep us posted.

Thank you for the update!

I just can't imagine the ups and downs you must go through in a day's time as you contemplate this.

You are all in my prayers...