Tuesday, April 10, 2012

Just Got Back From Hell

My mind has been clouded lately. I've been having great difficulty pushing various thoughts together in order to make cohesive sentences. For this reason, the computer's no place for me to be!

My new headache medication, coupled with what we just experienced with Aviana has caused me a great deal of...I don't even know the word I'm looking for right now. I have just plainly been out of sorts.

I will try my best to tell you what happened while in the hospital though, but truthfully - it's all kind of a blur. A haze I wish to never revisit once this is out.

After we found that Aviana's colon was perforated, we headed straight to her doctor's office. We discussed her liver biopsy, or lack thereof. And what we found was that due to her elevated numbers she either has a fatty liver, or a metabolic disorder. With either one, we wouldn't be able to treat her. If Aviana has a fatty liver, she would be in need of a liver transplant between about the ages of 10-20. Because of her brain injury, she would be unable to receive one.

Let all that simmer for a little while. But not too long, because there's more Hodder family.

Now hurry, no time to waste, let's move right on to her screwed up biopsy and perforated colon. We did a few different x-rays and there was too much, what they call, free space, so they recommended we immediately admit her to the hospital and start her on antibiotics.

Here is the terribly, heart wrenching part of having a severely brain injured child. The part no one wants to talk about. The part no one should have to talk about. The part we had to talk about. Sadly, and with the heaviest of heart, Dave and I were forced to look at each other, while holding our little girl and ask, "Do we want to put her through another surgery? Do we want to make her stay in the hospital for a week? Should we allow her to be sliced and diced, poked and prodded, slashed and gashed opened again? Is this the right thing to do to her? How much is too much? Where do we draw the line? When is the right time to wave the white flag? If she could talk, what would she say? What does she want us to do for her?" As you might imagine, our hearts were shattered into a million little pieces.

By this time, my Mom and Gary had arrived. I do believe many years were literally stripped away from each of our lives. We were unsure if these days would be some of our last with our girl. How would we ever really live without our Aviana. What would we do without her? Who would we be? How could we live without ever seeing those big, beautiful eyes again? We cried and cried and held her tight. We were beyond distraught, as the future was full of uncertainty.

We called a family meeting with all of Aviana's doctors.  Family meetings are surreal. I can't describe them any other way. Little lives hang in the balance. All I could think of was, we are too young for this! Who are we to be making these kinds of decisions for another? Who are we to decide what is best? Who are we to say what the makings are for a quality life? Who are we to decide if Aviana wants to go through another surgery? Who are we to decide if she should deteriorate to the point of death, or if she should stop now? Who are we??????

All I could think about was all of the kids who were out running and jumping and playing and enjoying their day. All I could think of was my kid screaming and crying out in pain, because the doctor accidentally went straight through her liver and clipped her colon. I wanted to scream! I wanted to kick something and someone for all we had been through, and all we were continuing to go through. When the hell is enough, enough?!? I wanted to hit something for the fact that our girl is sadly a series of unfortunate events.

We were told that had we not done the surgery and antibiotics, Aviana's death would have been hellacious. They said it would have been like burning her at the stake. They said even with all the drugs in the world, she would have suffered greatly. Our minds were made up. Of course we would never want any sort of pain for her. But of course, we are tarnished. Tarnished by real life. Marred by reality. Naive no more. We couldn't help but question, was the doctor just trying to cover his ass? Cover his mistake? We asked. They said no. Of course they said no. We will never know, but we would never take that chance with our girl.

I was/am so angry that we had/and will continue to have to make this types of decisions with every step of Aviana's life. It just doesn't seem right.

Anyway, we hugged our girl extra tight as we, once again, kissed her goodbye. We had no idea what that day had in store for us when we woke up. We knew very well that any day could turn on a dime, but we sure didn't expect that one to.

I didn't know how scarred I was from when Aviana was in the hospital, until I returned for that week. I was like a zombie. Going through the motions. I was so sad. Seeing her little body all torn up just about put me internally over the edge. Every blood draw made me want to jump out of my skin and wring some necks. But all I did was hold her tight, and smile graciously at the phlebotomist. Forgive me for saying this, but it's the only way I can best describe what my sad eyes saw -  by the end of the week, our Aviana's arms looked like those of a heroin addict : (

I need to move on from this particular post for now, but for some reason, I want you to know what it is I am talking about. These pictures don't do any justice as to how I felt, or how I feel now when I look at her healing body, or her scars, or just her. Of course I will never be able to explain, but for some reason, some part of me needs to put these pictures out there as part of my healing process.















Too small of a girl in too big of a hospital bed.




Drain going from her brain and out her head. 

I'll write a whole other post about that tube later.




Every one of those dots was from a blood draw, and this was her left arm alone.

Makes me cry.




I'll tell you about this picture sometime, but this was right after one of the most traumatic experiences of my life. A moment etched in my brain for eternity. My friend Jen and I had just calmed her down and cleaned her and her bed all up. She was looking out the window, and to me, wanting to be anywhere but there....me too baby, me too.




Hard to see in her head of hair, but there is a little area of stitches in the top section and then a larger row toward the bottom left of the picture.




You can see the bottom left ones better in this picture. 

These pictures don't even include the whole row of stitches from the front of her head, from the initial surgery on her head ; (




They went in through her belly button and, then she has these two other areas too. The other scars you see are from her g-tube removal and her shunt surgery.  There is a little dot in the top left of the picture by her arm. That is from the failed liver biopsy. That freakin' biopsy caused so much pain and heartache. 

I can't stand looking at all of these. They are reminders (as if looking at her is not) of all of the pure hell she/we has been through.




From the IVs.




Blood Draw or IV ~ I can't remember.




IV.

I don't have only terrible pictures from the hospital, I will post some others, but for now...these are the ones I needed to include.

I've been ok, but there have been times over the past few weeks when I have been scared, mad, sad, numb, tired, upset, pissed off at the world, and just plain sick of living this reality.

Thank you for being there for me, for us.

22 comments:

  1. Crying Jen. There are really no words. Well once again there are a whole string of choice words I could string together but even they would not suffice to show the heartache I feel. I can't even begin to imagine your own heartache. So all I've got is a plain and simple I love you. Kiss that beautiful girl for me love sarah.

    ReplyDelete
  2. I am just sick for you Jen... Nobody should have to go through so much with a child, with someone they love. So damn unfair, so damn illogical as to why a family should have to go through so much pain. I will never understand...

    Hang in there sweet girl.
    Love Jess

    ReplyDelete
  3. My heart breaks as I read this. The unfairness is staggering. I have no words except I am so sorry, and I am sending you and that precious girl the most sincere and positive good thoughts.

    ReplyDelete
  4. I am so so sorry that your sweet family had to go through and is going through this. Seeing the physical marks & scars of what her little body has been through is sobering. And that's not even including the invisible emotional scars that you & your family carry that obviously can't be photographed. You made it through this hospitalization. You are strong. Your family is strong. But I wish you didn't have to be so strong and that all this could go away. I'll continue to pray for miracles because that's all I know to do at times like these. I love you guys!

    ReplyDelete
  5. I'm so sorry. No other words. I'm so sorry.

    Shit hand indeed.

    I love you.

    And miss you.

    And Aviana.

    ReplyDelete
  6. I should freaking know better than to read this at work as I am sitting here crying my eyes out. I am so so sorry for all of this and like you, I am mad, angry, pissed off, sad, in disbelief of what the hell is going on and not having any answers is just the icing on the cake.

    Ever since I can remember, it is like the word "why" has been stamped across my forehead, I am a seeker, always asking questions and never satisfied to just be. I can't make any sense out of this and it breaks my heart. You and your family don't deserve this, you are some of the most amazing people I have ever had the honor of meeting and getting to know.

    I just want you to know that I love you all and if I could take away some of your pain and heartache, I would do it in a second.

    xoxo

    ReplyDelete
  7. Praying for your sweet baby, and for your peace (and sanity). Take care, thinking of you. Patti B.

    ReplyDelete
    Replies
    1. I wish I could say something to make you feel better, but I don't think I can. Take care of yourself, and of course of Aviana! I hope you all will be better soon, but I also realise that that is merely a hope and not necessarily the reality.

      /Elsebeth (reading your blog, I don't know you in real life)

      Delete
  8. I'm so sorry Jen. Thinking about you guys..

    ReplyDelete
  9. Jen, I am beyond words with what you had to go through and all of the horrible emotions that you had/have to deal with. What a horrendous experience. It is not fair to any of you. It is so hard to see her in the hospital bed with all of her holes. I am sure she is so glad to be home now. I am here for you to talk to if you ever need me. I will always be waiting in the wings for you.

    ReplyDelete
  10. Poor sweet baby girl! Her little body looks like train tracks have crossed it over and over. And, her little face looks so sad. If it breaks our hearts, I can imagine what it's done to yours....all of yours.

    My thoughts to this question "Where do we draw the line?". I don't know, but I think you will if and when the time comes. For now I'm just wishing and praying for peace for all of you.

    I love you Hodder Family!

    XOXO
    Dixie

    ReplyDelete
  11. even tho' i am not here you all are always in my thoughts & prayers

    ReplyDelete
  12. I've been a loyal reader since the beginning of this blog; I usually quietly read and support you without commenting...I just want to tell you I am sad for you, for your family for your sweet precious, oh so deserving Aviana. I wish I had something to say that would help. I will say that I am impressed with your maturity in handing this with the caregivers...I can also say that I would not have been able to be as dignified...I would have been making matters worse with my indignance; I don't think I would have been able to be as gracious as you are. I pray that Aviana continues to heal and that answers are given to assist in continuing to treat her medical issues, with the least amount of disruption to her comfort and daily freedom.

    Huge hugs and support, ongoing prayers in our home for your entire family, Jana

    ReplyDelete
  13. I, too, cannot come up with words to say. You and your family are always in my thoughts. Sending lots of hugs!
    Ruby

    ReplyDelete
  14. Oh Jen, thinking and praying for you guys.
    Love Deanna

    ReplyDelete
  15. Keeping you all in my thoughts and prayers!
    Janet

    ReplyDelete
  16. Sending my biggest, softest virtual hug to you all. I think of you all so very much. She is one special little angel with one courageous Momma Bear.

    ReplyDelete
  17. I am so, so sorry that you all had to go through that. None of you deserve this. My eyes are filled with tears seeing Avi like that. *hugs*

    ReplyDelete
  18. Oh Jen its all just too much, I know you guys get thru it the best you can because thats your option but how terribly awful, what to say, its just so sad.

    ReplyDelete
  19. SUCK IT, BRAIN INJURIES!!
    I hate 'em
    I hate 'em
    I hate 'em.
    It's so not fair. She deserves much, much better than the cards she's been dealt.
    and while I'm at it...
    SUCK IT, SURGEON!!!
    who obviously doesn't know his scalpel from his ... well, you know what.
    Sorry, Jen...but I'm just so angry and sad right now for what your girl has to go through. Like she needed THAT, too? I mean, wow. Just wow.
    I think of you guys, of Avi, every single day. I mean that.
    ((hugs)))

    ReplyDelete
  20. I can't believe everything you all have gone through - it is just horrible. I hope after all of this she will have many wonderful pain free years. All of this is so overwhelming.

    ReplyDelete
  21. Jen,
    I'm so sorry I haven't kept up. I haven't been much of a blogger...writing or reading. And I was so sadden to read this post. I truly have no words. Please know you and Aviana and your family are in my thoughts and prayers. Let me know if you need someone to yell at....I can be your sounding board.

    ReplyDelete