Feeling

I feel sad. Dave feels weary. Ash feels miserable.

Anyway you look at it things aren't good. Ashley spent the day miserably fighting against any and all forms of oxygen support. She's been restrained and its making her crazy. She is unhappy, hurting, confused, angry, frustrated, and sore. She has cried and cried and is still crying. I guess we are all of those things too minus the sore part. Dave and I don't have wounds on our bodies but we do on our hearts.

I'm just so tired of watching her struggle. She's been crying and fighting all day long. I hate this. Really hate this.

I feel mislead. Lied to. Its so hard to be in this place. "In a couple of days you'll be amazed at how much better she'll be feeling." Really? We are about 5 hours from that 48 hour part and so far this sucks.

I look at her and my heart aches. I cry when thinking about all the things I had planned for her. As e struggled though dressing changes with Dave across from me pinning her down I just started to cry. I looked at her tiny torso and thought to myself "I guess it won't matter that she's scarred. She won't be here to fall in love, to be married, to raise a family." My heart is so broken. I've always known she might not grow up, but to be told that she really won't has just devastated me. I hurt so bad. So terribly bad.

Dave and I are trying. We really are trying. We want to be positive but there is this heaviness that is weighing in our hearts. Our faces show it. Our eyes tell the story. We are so heartbroken. I just want to take her home and yet I would be naive to think they are actually going to allow us to do so. We've played their game for years and the only way our sweet girl is getting out of this hospital is with a fight. Do you have any idea how tired I am of fighting? I'm just so tired. Everything that is being done in this hospital room can be done in our home. Absolutely everything. Once they place a line in her body then we should be packing up to go home, but yet I know its not what they are going to allow. If they are not willing to re-evaluate her and list her then we need to get out of here. Her health is never going to be perfect. I highly doubt that we will ever even have a day or two of close to perfect ever again.

I think we could face this better at home. Together. Here in this place where she is touched, violated, woke up, examined, weighed, etc, etc. every day, all day, at any time of the day, by any person on this staff that feels like it, she can not find quality. There will be no quality of life as long as she is here in this bed. So whatever it takes. Even if it means I do have to try and get somewhere with the most difficult of surgeons in this place this week then I will keep fighting for home. On oxygen? Give me a tank. IV anti biotics? So what, I can run that. Daily albumin? We have a treatment center that can infuse that. Lab draws? Handled. There is nothing we can't figure out how to get or how to do if it means taking her home where she belongs while they make us wait to even discuss another transplant.

Watching her die from end stage liver disease or sepsis or re-transplant? If they say its not an option then I'm afraid we are going to go nuts. In our minds its not even a question. As much as another transplant makes me cringe inside she deserves the opportunity to grow up. I can't be forced to watch her die as we do nothing. We have to try. We just have to.

Dave leaves at 4am then it will once again be just the two of us. Knowing we will be here alone again makes it hurt all the more. The blessing in this week is that by the end of it we will be surrounded by our closest family and friends who have all come to celebrate the live of our youngest daughter. She turns 5 on Wednesday. Not in the place I had hoped, but still she will be 5 years old. Wednesday is going to be hard. Really hard.