My mom was beyond beside herself yesterday. She seems to be very positive and hopeful today. While I do not want her by herself, I understand that is her wish for now.
We went to visit Gary today and as broken and beaten up as he is....all he cares about is his little "chocolate eyes." They ran him through a series of tests and decided he shouldn't be discharged. He will be moved to Kaiser at 3:15 this afternoon. He will be at the Kaiser in Sacramento on Morse. They could not move him to Roseville as there is no neurology staff, or something of that nature. He is also understandibly beside himself.
My Mom and Gary are very strong and always come out on top...they will be OK.
I am pryaing for your little girl. If you need a friend who has been there, done that in regards to a baby with a brain injury, please contact me! Your story (her story) is so familiar to me.
ReplyDeleteMy daughter was 4 when she had her accident. She, too, was in an induced coma. She also had to have a part of her skull removed, along with a portion of her left temporal lobe, to make room for the swelling. Her ICP pressures rose to over 40 at one point. We were told that once it got to 50 she would not have any blook flow to the brain and the result would be brain death. Luckily, it began to go down. I would watch the monitors every second,and I remember the relief I felt when seeing those numbers at 17, 21, 16, 15,... they would fluxuate and drive me crazy with worry. But then they finally went to 8,6, 7, 6, 5, and then 4, 3, 4, 5, and so on until they were normal. Ugh, what a hard time that was. I never left her room. I slept there, in the chair by her bed, and all I could do was stare at those monitors. At one point when the ICP number got so high, they called in the chaplin to pray over her because they knew she wasn't going to make it. All my family came into her room to say good-bye and to pray, and I walked out into the hall. I couldn't do that. I just could not give up, say good-bye...any of that. I couldn't imagine our life without her. She was the second of my 3 children. There would be a big gap between the first and third child, always a hole in our family. I couldn't accept that. So I prayed the hardest I had ever prayed, outloud, right there in the NICU hallway where everyone and anyone could see me. I begged God not to take her. After a few minutes, my husband peaked out of her room and said, "Her pressures are going down!" I ran back into the room,and it was true. They were suddenly in the 30's and 20's. It was as if my prayer was answered just like that.
Our daughter is Audriana. We had about 4 days where we didn't know if she would survive. I remember one night during those first days her attending nurse quietly said to me, "Honey, I know this migh sound awful... but after all that her little brain has been through, you might not want her to survive this." And you'd think that would make me furious to hear, but for some reason I didn't have any reaction to that. I seriously thought about it. Did I want my daugher to live if it meant she would always be in a vegetative state? Depending on machines to feed her? Not being able to communicate? The answer to that was NO. I would rather have 4 years full of wonderful memories of a happy, healthy litte girl than a lifetime of sorrow watching her suffer, strapped to a bed all of her days. So I prayed that God leave her with me only if she can have a good quality life, be able to communicate with us in some way, be able to have joy. I remember one of my mother's friends at that time disagreed with me. She said if it were her daughter, she'd take her anyway she could have her, even if she were in a prolonged vegetative state. I think that's easy to say when your aren't the one facing it. I loved my daughter too much to want to keep her here just for myself. I wanted her to have a quality life, not just life.
She was in an induced coma for a little over a week. When they brought her out of it, she just lay there and couldn't open her eyes. She would move the fingers on her left hand. So we started asking her questions to see if she understood. "Raise one finger for yes, and two fingers for no" and then we'd ask her, "Do you have an uncle Ben?" (she didn't. she raised two fingers. We were thrilled.) "Do you have an uncle Phil?" (she does. she raised one finger. We were thrilled, and so relieved to know that she was still "in there" dispite not being able to move her body or open her eyes or smile or speak.)
ReplyDeleteIt was an awful time, and I thought I'd never be happy again, so long a my little girl was so hurt. I worried so much back then-- what would life be like for her? Would people make fun of her, if she were mentally and/or physically handicapped? would she have friends? These were all the thoughts and worries I had in the beginning. She was 4 when it happened,and she had just started preschool. She had just started writing her name and was able to cound to 20. She had friends and she could ride her tricycle. She had jus started ballet classes. She was so smart, and so able to do anything she wanted to do. She was very independent. And in just one second all that was completely wiped away. It was heartbreaking.
Then it was so frustrating not being able to get any real answers from the doctors. No two brain injuries are ever alike, so no one could tell us how she would recover. Oh, I hated that the most. I wanted answers! There simply were none.
She spent 5 weeks in the NICU. She had to have facial reconstruction once she stabilized because the right side of her face, the bones of the eye socket had been crushed. She was transferred to another hospital for rehab. We spent 2 months there. Audriana at that point could not move the right side of her body. She could not talk. Her mannerisims were that of an 18 month old. She would grab a Barbie doll and bang it on the side of the wall over and over again, and laugh as if that were the funniest thing to do. It was so hard seeing her that way. Before the accident she would comb her Barbie's hair and dress them, etc. Now she acted like such a toddler. I was told that her brain still had a lot of bruising and that we had a lot of recovery still to do. I remember feeling so angry that this had happened to her. It was not fair! She deserved her life to be easy, like it was before. I hated that we were forced into the new world, a new way of life, dealing with a brain injury. I did not like the Brain Injury World. It was sad and depressing, and it got in the way of fun. I was not my plan. I did everything I could with my pregnancy with her -- I ate right, I did all the right things -- to insure that she had every chance of being healthy. And then one day, something undid all that I had tried to do. I was so angry. And sad. And I felt helpless. I couldn't protect her from this accident, and I felt guilt with that as well.
It was a long road. Once she came home from the rehab hospital, we began an intensive in-home therapy with her. I had read the book What To Do About Your Brain Injured Child by Glen Doman and decided that that was the most aggressive therapy that we could do for her, and that was the route I wanted to take. So that is what we did, for almost 3 years! Looking back, it was the hardest 3 years of my life. Her therapy dominated every minute of the day back then. But it was so, so worth it! I'd rather have had 3 hard years that weren't full of too much "fun" that the result was a lifetime of good days, days where my daughter could actually do fun things, walk again, talk again, etc.... than to have a lifetime full of struggles for her. I knew we had to act fast because the most recovery is done in that first and second year after a brain injury.
ReplyDeleteRight now Audriana is 16 years old. She has vague memories of those therapy years, but she can remember parts of her "program" and all the creeping and crawling we had her doing around the house (part of her therapy) Audriana learned to walk again, and walks quite well dispite a limp with her right leg. She learned to talk again, and she talks normally! She has friends and hangs out at the malls with them, goes to the movies with them, etc. She is in high school and struggles a bit with acedemics, needs extra time for assignments sometimes. She has learning disabilities but nothing major. It just takes her longer to learn something and she needs more studying than the average student.
I know this is a long post, but I just wanted you to know that I believe your little girl is going to be just fine. Maybe not right away, but in time. She is so young, and her age is a positive in this situation. She has a much better chance that her brain can relearn lost functions, the younger the age the better it is for that. She's two years younger than that age my daughter was when she was hurt, so that's a good thing.
You can see my daughter on my blog, but you might have to search the archives to catch a post about her. I have so many entries, but you'll see her on there.
http://ourbigfamily10.blogspot.com/
Another thing, during her hospital stay I wrote in a journal. I didn't have a computer back then -- it was in 1997 -- but if I did, I definitely would have had a blog like yours! Keep blogging about this experience, about her recovery, about your feelings. You will want to look back on it one day. You might be able to help someone else through this ordeal. Better yet, your daughter might really enjoy reading it. I know my daughter likes to read mine. She knows her recovery is a miracle. It's nice for her to be able to read the things I was thinking and experiencing during it all, the things she was doing.
I'll pray for Aviana's recovery, and I'll pray for your strength, too. You'll need a lot of emotional and mental strength during this time. You'll have days where you are so depressed and you miss the "old" her, and days where you are so happy because of something new she has done. It's an emotional rollercoaster, let me tell you.
Trina
mommy9times@aol.com
Trina- You are a god send. I just found your note and I want to thank you for so many things: sharing your story with me, being concerned about our situation, giving me hope and strength which I desperately need, providing guidance as to what to expect and how to proceed, and so much more. I thank you from the bottom of my heart for your post and will definitely keep everything you have said at the forefront of my mind. I am actually speechless now, you are such a wonderful person to reach out to us : )
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