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.
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.