Monday, May 13, 2013

Unintended

My gosh, I absolutely loved reading every single one of your lists. If they never stopped appearing, I could keep reading all year long. I should have included this as one of mine (actually, in a past post, I believe I did. Yep, I had a feeling I've done this before and it's #8) Well, I'm going to add it again.

26. I love reading other peoples' lists!!


I can't wait to go back and comment on them either! I was laughing, nodding my head in agreement, tilting my head in - I should try that, and all sorts of things! Loved it!! Thank you!

So many times in the past I've said, 'light to counteract the heavy' or referred to some sort of appointment of Aviana's, etc. It seems this one sparked some interest and even a little concern. That was definitely not my intent. In no way did I want to be one of those annoying breadcrumb dropping fools ; ) I was just speaking as I have many times before. 

I had other posts lined up prior to this one, but now I'm going to go ahead and begin explaining... 

If you've been here for any length of time, I believe you know from the get go it has been our wish to let Aviana go if the time came. As a family we have fully believed in her quality of life. Therefore if her quality isn't good, it's our plan to evaluate along the way and let her go should something arise. Yes, these words are very difficult to type and the meetings and discussions along the way have been that much more difficult to sit through!

We were told very early on while in the hospital that it was in our best interest to put a DNR (do not resuscitate) in place as Aviana has severe brain damage. If anyone tried to resuscitate her they would only cause more, so we agreed and have had one in place since.

The only reason we continued on in the hospital was in hopes of our fiercely independent girl making some sort of recovery. So as time and our recovery efforts yielded no results, we moved into accepting Aviana for whom she is. We were moving along, learning to live in these new roles, when we hit a speed bump. 

We had been fighting her liver pretty much since the accident. Her numbers have been really high, and all efforts through diet have pretty much fallen flat. We finally decided to have it biopsied. A fatty liver was suspected, with a 25% chance of cirrhosis in the next 10 years. If she weren't brain injured, she would have been immediately put on the liver transplant list, but...she is. 

As you may remember, we asked to have her head and biopsy done at the same time in order to put her through one single surgery, instead of two. This is a girl who bounces back from surgery after surgery like nothing. This time was different. This time - she was moaning and groaning like I had never seen. This time she was clearly in pain. As it turned out the doctor went right through her liver and nicked her colon. Well, they didn't tell us this for a few days. 

We had to immediately rush her back to the ER. At the time she had a shunt so avoiding infection was crucial. They were going to have to externalize it and also go in through her stomach to fix what they had punctured. 

Dave and I called a quick time out to back up and discuss the whole situation with them. We are Aviana's voice and because we have one, we owe it to her to use it every step of the way. The very last thing we ever want for her is more pain, discomfort, continual hospital stays, and to once again see her as a human pin cushion. It's our job to balance out her quality of life vs. her comfort and well-being.

We called my Uncle Roger, my Mom and Gary and then the two of us went straight into a family meeting to discuss the possibility of letting her go. Talk about wanting to be a kid again, my gosh...did I ever!!! These family meeting moments are absolutely surreal to me. As many as we've had the pleasure of attending, they are something I will never get used to!! "Is this really us, talking about our daughter? But, we're all still kids. Did those words just come out of my mouth? How on earth did we get here...again?!? Are these walls closing in on me, because I feel like they are! And what's that picture doing there? Hmm..."

In the end, we were told by the doctors that it would be like burning her at the stake if we let her go that week. Well, that settles it now doesn't it? Many have weighed in, including lots of Kaiser doctors who have heard about this. Of course everyone has his or her own opinions. At the end of the day, Dave and I could not take the chance with Aviana.

I only included a few posts last March because it was definitely one of the worst weeks of my life. The pain was too deep and multifaceted to relive in the writing and retelling. When things go really sideways, I tend to turn inward. I still have yet to fully process all that happened - what I saw, what I felt, what Aviana and I experienced.

There's a lot I don't remember from that week - by choice, but what I do remember is this...I sat and watched all week as my daughter was moaning, groaning, crying, poked, prodded, and stitched. I remember the blood and tubes coming out her matted head. I remember the numerous holes in both her black and blue arms, her hands, her foot, her tiny little stomach and sides. I remember the far off blank stare in her eyes, as if she were looking straight through me. I remember them continuously fishing for her veins, this arm, that arm, how about the foot. Repeat.

I was beyond devastated that once again - she was a series of someone else's unfortunate events. She was once again taking the fall, the brunt of it all. Through a mixture of tears, anger, and downright sadness I vowed one single thing to her, "this Avi, I promise you...this will never happen again!" 

At the time we knew it was crucially important to have everyone on the same page, so if ever anything happened again - there would be no question as to what our wishes are. Many things were a complete blur that week, but I do know I asked for them to send all of the people up, and more of the appropriate paperwork. As I looked at Aviana lying in the hospital bed, with all that junk sticking out here and there....I signed and vowed, signed and vowed.

There's more, but I need a little : ) 

22 comments:

  1. I can't imagine what you go through. I cannot. I have always been someone who never ever wants to let anyone suffer. I would never want to be left to suffer. I can't take those people and I have them in my family, who let pets suffer and old people suffer bc they selfishly want them here or believe its god's job. It gets me so upset. None of us/them have had anything like what you're dealing with I KNOW that fully....but I am just sooo glad even though you love her so much and she is your whole world, you love her enough to not let her suffer if she should again (I hope there isn't a next time). I cannot cannot imagine what you go through. I think of you...good thoughts for you both . Xoxo

    ReplyDelete
    Replies
    1. I completely agree with you! Letting Kama (my dog) go was one of the hardest things I've ever had to do in my entire life. We tried chemo for a little bit and she was not responding well. We could have tried a little more, but I knew. She had lost her spark and was spending too much time at the place she hated most - the vet. It all came down to quality. She was losing her quality, and even though she was young, and I selfishly wanted to keep her (my GOD did I want to keep her!!!I) I had to step out of my own way. I knew the last and greatest gift I could give her...was to let her go, even if it RIPPED my heart out. Often times, I wanted to die without her, but there were many times when I felt peace for doing what was best for her. Yes, if you love someone...you let them go.

      Going through all that with Kama has prepared me for what's to come someday with Aviana. I'm sure I will go through all the very same emotions...heck, I already am...

      Thank you so much for being here ❤

      Delete
  2. You have such strength, it's amazing. Thank you for sharing this.

    ReplyDelete
  3. I cannot imagine. I just can't. I admire your strength. Aviana is lucky to have you. She is lucky to have you as her voice. My thoughts are with your beautiful family. Thank you for sharing, sending love your way.

    ReplyDelete
  4. I love you. I just love you.

    And it's time you did another "What's In My Purse". Yes, I read US Magazine too :) Oh, and the "5 Last Things" that is at the end of People Magazine! You know, because it's really all about the trivial things in life, haha.

    ReplyDelete
    Replies
    1. What's that? I might have to do it ; )

      Delete
  5. I had to go back and look at the pictures from March 2012 because they are some of the most heartbreaking, precious pictures you've posted. You are so able to reach in and touch all of our hearts, even though I don't think that's your intention. I know, we all know, how much your entire family adores Aviana and I think you know that we do, too.

    Hugs and love,
    Dixie

    ReplyDelete
    Replies
    1. Yes, those kill me. Thank you Dixie. Love you!!

      Delete
  6. Such hard moments put decisions in perspective. I am glad you have peace (I think you do?) about the choices you are making for your dear, sweet girl who can't speak for herself.

    I need to do your question list!!!

    Xoxo

    ReplyDelete
    Replies
    1. You are so right...isn't it always when most pushed to the brink! Yes, I do believe we have found as much peace as we will find. Yes, yes, yes... twenty five - please ; )

      Delete
  7. Love, prayers, and hugs from Ohio.

    ReplyDelete
  8. I"m so glad she has all of you behind her, to be her voice. Nobody would want to go thru all of that over and over and over. What a horrible discussion to be making about your child, but so proud of all of you for doing it.

    ReplyDelete
    Replies
    1. Thank you so much. I really appreciate you for always being here : )

      Delete
  9. Jen,I was given the best advice by a renowned doctor at NICH and he told me not to allow doctors to do anymore invasive tests or procedures on my child unless his health was declining.I always followed that advice sometimes even against doctors wishes and it was always proved to be the right decision for my childs situation.I also always followed my gut and feel that was God giving me the right answer.I pray that God gives you peace with all the decisions you will need to make.Sending prayers your way.
    Lisa

    ReplyDelete
    Replies
    1. Hi Lisa ~

      I do believe that is some great advise from one wise doctor! I feel many doctors are about medicating, procedures, etc. We learned early on from the place we went in PA to avoid as much as humanly possible. I am so thankful to them for their many lessons. I cannot believe how much some of these kiddos have been through and how many unnecessary medications they are on.

      Thank you so much for your comment. I really appreciate every single word of it.





      Delete
  10. Hi Jen! I remember reading your posts from March of last year. I'm so sorry for all that Avi had to go through and is still going through.

    You are such a devoted, loving mom. I hope Dave spoiled you & you enjoyed your Mother's Day!

    ReplyDelete
    Replies
    1. Thank you my dear. I hope you had an equally great Mother's Day full of spoiling : )

      Delete
  11. I've often wondered why I feel such a connection with you having never even met you. The conclusion that I've come to is this, you have such appreciation for the beautiful life you live. Your writing conveys such love. I truly believe we are uniquely qualified to handle all that is dealt to us, the good and the hard. I know that aviana can't speak with her mouth, but her eyes, her eyes speak volumes. The eyes really are the windows to the soul. You have a home full of beautiful souls. Thank you for sharing your Dave, Aviana, Kama & Rainy. I have learned much from you.

    ReplyDelete
    Replies
    1. You have a way of leaving me speechless, and you know what a blabbermouth I am ; ) My gosh, thank you so very much for your beautiful words. Thank you so much for including, my love, Kama in them. Love to you always...

      Delete