Saturday, July 18, 2009

Lately

Aviana was quite shaken up by the transition from Davis to Kaiser. Rightfully so. She would get so angry when they would change her diaper or suction her mouth so I knew the transfer was going to be difficult for her. It brought me to tears thinking of all of the movement from one hospital to the next.

Sure enough, for the first two days she was miserable. She was so uncomfortable and it was written, more like sky written, all over her little face. It broke my heart to see her like that, but in the back of my mind I knew it was a good thing. It was great she was transferred from urgent care. It was great she was showing such strong emotions. It was just so very hard to watch her heart rate sky rocket. It seemed every time she would calm down, they would have to do something else for her care, which would raise it back up. Broke my heart. If she could talk, she would have been screaming "Please stop touching me!!"

The doctors at Kaiser (thus far) have been less than optimistic about Aviana's prognosis. They do not like what they are seeing on the scans and have made their voices known. One, in particular, sucker punched my parents while I was not there. He said Aviana had about a 1% chance of recovery. It would take an absolute miracle.

Thankfully, my aunt and cousin had showed up at the perfect time. They called me and I immediately left for the hospital. I joined them in the putting out fires department! I was suddenly catapulted back in time. To the time prior to the MRI results. This time was different though, this time I was armed with knowledge and experience.

It was apparent to all, they had not seen the MRI Davis had completed and reviewed extensively. Long story short, words were exchanged between that particular doctor and I. The next day the same thing happened with another doctor. I asked if he had reviewed the MRI, and that I thought it should have arrived by now. He pulled it up and surprise, surprise....he did not agree with the UCD doctors assessment of the scan. I say whatever with a capital W.

Amazing, two hospitals, SAME MRI, different opinions. In reality, it shouldn't be so shocking. I have said in the past, I carry my dear, new found friend Trina in my back pocket with me at all times. I flashed back to her written words and repeated them in my head.

So....once you see the MRI don't freak out. I know I did when we saw Audriana's. There was literally nothing left on her left hemisphere. Just vacant space where brain tissue had been surgically removed, and then dead tissue elsewhere. I was devastated when I saw that. But knowing what I know now, that wouldn't bug me so much anymore to see that. And I'll tell you why. The child's brain is amazing! Lost functions that were in the damaged areas can be taken on by other non-damaged areas. This is what happened to Audriana. It can happen for Avi, too. The doctor's do not want to give you false hope. They aren't there for that. They are there to tell you the facts as they know them. And with brain injuries, they are never the same. So I know it's hard, but please don't let them dash your hopes. We were told Audriana would never talk again. And that is her BEST recovery! So they didn't know. They didn't know! .... let's just see the MRI....and even then, remember what I told you, it will show structure but not function. Function can come later as the brain makes new connections. DO NOT FREAK OUT if the MRI looks awful. It's going to be hard not to, if you see a lot of damage. But when you start to, just remember my words about structure and function, okay? I remember Audriana's CT scan. Oh, it was awful. So much damage on that left hemisphere. And she had an MRI just 4 months ago, and it looked pretty bad as well. If she weren't standing there right in front of me, the doctor had said while viewing this MRI, I would think this brain belonged to someone in a vegetative state. She's amazing. Because just looking at all the damage you would never know that the other unhurt part of ther brain has taken on some of the functions. This is the difference between structure and function. This can happen for Aviana, too.

People throughout the course of time have been written off in so many ways. Terrible prognosis, not going to make it, not going to walk, not going to talk, the whole 9 yards. How many times throughout your own life have you been told, "You can't do it?" For me personally, those types of statements have always fueled the fire even more. Here we are again and I am not going to let anyone tell me no! Aviana is the EXACT same in spirit, but much more than myself. She has the most amazing will I have ever encountered.

Without words, I can hear her loud and clear..... "AVI DO IT!!" She is a survivor by nature, her entire being has always shown me she can conquer anything with flying colors. The force is STRONG with this one!! Oh my gosh, did I just reference Star Wars, the movies I have never really seen and continue to get made fun of for not knowing about! Well anyway, all I have to say is, "May the force be with you little one."

18 comments:

  1. keep the faith! praying for your family and Aviana.

    ReplyDelete
  2. Hope you know that my family is also praying for Aviana's recovery...

    Kids have such amazing self healing power that, we adults (doctors), just don't fully appreciate until we witness the "miracles" happen. It was definitely nowhere near Aviana's trauma, but my son also showed me his little self healing power. He bumped his tooth back in Feb. There was lots of blood (scary for any parent) and the tooth looked like it had disappeared into the gum. I was glad that his Pediatric dentist strongly advised me not to have an emergency surgery to extract the tooth, enen though, I was pushing really hard to have a surgery to extract ASAP. I really did not believe her when she told me that, with young children, sometimes the gum tissues would push out the tooth by itself. Thank God, I did listen to her. To my disbelief, the little tooth was indeed pushed out again, even though it's now a little crooked!
    It's great that Trina has given you her advice with her daughter’s similar situation so that you will have more confidence in Avi's own power of healing in this long journey to recovery. Avi is a fighter and with your loving care and support, her little body will heal herself in time. We, adults, just need to learn the patience and wait for her to create her own miracle.

    I know that you have probably researched and read all the books you can find about recovering from a brain injury, but I thought that you might want to check out some of the Chinese natural healing methods (through acupuncture and foot massage). We believe that the nerves are all interconnected from head to toe (literally). Even you can just massage Aviana's little feet yourself at the “right” spots a few minutes a day. It might help stimulate her brain nerve growth and recovery.

    I also want to share with you another person’s miraculous recovery from a traumatic brain injury. Back in May 2002, a famous Taiwanese reporter, Liu Hairuo, suffered a traumatic brain injury in a major railroad crash while visiting Britain. As a last bid to save her life, her parents had her flew to Beijing and she was treated by the Chinese doctors through a combination of Western and traditional Chinese medicines. Liu has since recovered. If a 30 year old woman can recover from such a traumatic brain injury, I see even more promises for your baby girl.
    Potters Bar rail accidents
    Celebrity Miracle Cure in Beijing Means New Hope in Taiwan
    Liu Hairuo Returns to HK

    Best Wishes and we will keep praying for Aviana!!

    ReplyDelete
  3. You Know her best..They (Doctors) are taught to believe only what they see..You KNOW her strength. You know Aviana and all that she can do. You all just keep that faith as strong as ever. She will continue to amaze you. My gosh, your words are just proof that you are amazing parents! God Bless!

    ReplyDelete
  4. All I can say is OMG! Jen and Dave our thoughts and prayers are with you every step of the way everyday. I just know that Aviana will come through this with flying colors. From everything i've read from your blogs Aviana is a real trooper and she is going to "SHAME" and I do mean "SHAMELESSLY SHAME" the doctors at kaiser! You go Avi, show them the meaning of determination!

    Becci & Angela

    ReplyDelete
  5. Please know that you have many followers that don't always comment, but who are praying for you and especially for that STRONG TROOPER, better known as Avi. You are fortunate to have the wise words of a mother who has walked in your shoes before. Her words were very powerful and are a true testament to meaning of miracle. You are brave for all that you have endured and carry around on your shoulders and heart as you patiently await Avi's FULL RECOVERY. You are a strong Mother, and good for you for having those words with the physician at Kaiser. I'm so sorry your family had to be "sucker punched" in your absence. God must have been protecting you from it, and in turn you had the strength to express your mind!

    Children are amazingly strong, they are gifts from God. Praying for a miraculous recovery, and especially for comfort as she transitions to the new facility. Praying for you, Avi's mom, because you need the rest, the strength, and the courage to survive this journey too!

    You're in my prayers.
    Tiffanie

    ReplyDelete
  6. We called my Dad's doctor "Dr. Doom and Gloom". That was 20 years ago after a major cancer surgery and Dad is still going strong. Keep your attitude strong we are all with you.

    ReplyDelete
  7. As you know already, the Great Physician will have the final say

    prayers & love from Louisiana

    ReplyDelete
  8. I just wanted to add that we adopted our daughter from Guatemala, too. (In fact I first read of Aviana's story on the Guatemala adoption forum). She came home February 2007 at 10 1/2 months old. She is now 3 and looks very much like Aviana. Seeing the pictures from your pick-up trip brought back a lot of good memories for me. I can so relate to the post that you wrote about how you felt after ya'll got home. I went through similar emotions and I guess now looking back I would describe it as almost being like post traumatic stress. Let's face it - PGN was brutal (not to mention everything else that an international adoption involves). You don't know me "in real life", but I want you to know that I pray daily for Aviana's complete recovery and that God will give you strength. Remember - out of the 6 + billion people on this planet, He picked you & your husband to be her parents and he will equip you to care for her perfectly.

    A fellow adoption road traveler,
    Channe

    ReplyDelete
  9. We're still praying for Aviana in our home. The Lord performs miracles everyday so keep the faith she'll do well! HUGS and prayers coming your way!!

    ReplyDelete
  10. Jen, I am very proud of you for your strength. This is the mother bear strength. that KNOWS her daughter---I'm reflecting on the reflections post and so in aww at your phenomenal connection with Aviana....I can only imagine how hard it is to have such a different mix of physicians, in opinion, in manner, in everything...keep the faith, keep what you know, keep what Trina told you and know the prayers are amazingly powerful for her hourly.

    ReplyDelete
  11. I love your spirit! Don't let any Dr. take away your hope. You know Aviana best. You know kids can make tremendous recoveries from brain injuries. I'm so glad you set that Dr. straight.

    Reading your blog and praying for Aviana daily,
    Denise

    ReplyDelete
  12. Jen, Your strength courage and grace continue to astound me! You are a true mama bear and Avi is lucky to have you for a mother. I have faith hope and trust that Aviana will come back to you. I have seen her will and her strength and those Dr do not know her, you are right. Aviana WILL show them!!!! Avi do it, Avi do it, AVI DO IT!!!!

    ReplyDelete
  13. This comment has been removed by the author.

    ReplyDelete
  14. FYI-
    Ling Feng, director of the Neurosurgery Department of Beijing Xuanwu Hospital
    I meant to add with this link was to show you that Miss Liu was only saved because her parents REFUSED to let the British doctors dash their hope & found the right doctor to help Liu. Parents can't and won't give up so on their kids so easily.

    "May the force be with Aviana!"

    ReplyDelete
  15. I'm so glad we got to come down to see you all today. I think I accidentally tickled her feet a few times. Poor thing was squirming like she was saying 'Stop that! It tickles!' Good luck tomorrow. We'll all be praying for Avi and the rest of the family.

    ReplyDelete
  16. I'm sorry that the new team isn't giving you as much hope. I agree with the other people who have left comments...YOU know her best. Not to mention that what shows up on MRI films cannot predict what will happen next, and how MIRACULOUS children are! My brain surgery performed by Dr. Boggan at UCDMC was due to an "abnormality" that was randomly found on an MRI ordered by an ENT doctor. I had brain surgery to take it out, and the tests showed it was normal tissue. Which means...an MRI is only a picture, not a "sentence". Keep the faith. The fact that she is stable enough to be with her new team of doctors means she has already made HUGE gains in her recovery.

    ReplyDelete
  17. hi Jen - I am a friend of your cousin Janet Snyder. She sent me the link to your blog right after Aviana was hurt and I've been following it ever since. I can't tell you how much I admire how you are handling this situation. Aviana is lucky to have you in her life, as I know you know you are lucky to have her! I pray for her recovery. I wanted to tell you about a program that my son did when he was young - it is a program for brain injury treatment. It's a wonderful program and the people who run this place are phenomenal and care more about children than any people I know. Here is the website.

    http://www.nwneuro.info/?q=node/20

    They've recently redone it, so I'm just sending the page with contact info if you want to call them and explain the situation. Play around on the website and check every link. Northwest Neurodevelopmental Training Center is a non-profit program. My neighbor did the program after two car accidents that both caused brain injuries. He walked with a limp, stuttered and had short term memory loss. After doing the program, they all went away - and he was an adult! Just think what a child's brain can do on this program. My son has asperger syndrome and he did the program for almost 3 years, from ages 6 to 9. I believe he is higher functioning today because of this program.

    Anyway, I hope you check into it, and I'm praying for Aviana every day.

    Barb White
    Seattle, WA
    bwhitelmp@gmail.com

    ReplyDelete
  18. Read the book The Brain That Changes Itself. I know you will find it encouraging. Great stuff about neuroplasicity...

    ReplyDelete